Leo The Lions battle for a life
Donation protected
We are thrilled and touched to have have reached the £150,000 target in order to begin Leo's treatment in the USA. We cannot thank you all enough! Your support has been overwhelming.
Unfortunately raising this sum is just the beginning of the journey. Following the procedures that Leo will undergo in America, he will require extensive rehabilitation treatment back in Spain. This comes at a further expense. For example, the physiotherapy he will need for at least three months, will cost £1000 per day! That's over £90,000 in total! And this is just the tip of the iceberg.
We are here to fight for Leo, and we will continue to fight by helping to fund these future medical provisions. I know this is of great comfort to both Leo and his family.
We cannot express how much we appreciate your kind support. Suffice it to say that your generous donations are helping to save this young boy's life - a lovely boy who shouldn't have to be going through such an ordeal - an ordeal that he has met and continues to meet with incredible bravery and grace.
Lots of love to you all xxx
WHAT IS THE PRICE ON LEOS LIFE.....SO WRONG BUT IT IS.....150,000 GBP.
I feel like a broken record but we need this TEAM LEO viral...bigger than ever!!
I have spoken Dr Chang in Oklahoma, this is the approx price which includes accommodation.
Dr Chang has already been in contact with the radiologist at Alder Hey Hospital and next week he will call Leos oncologist there.
Dr Chang has a lot of experience with sPNET and the kids he has treated have been in remission since....
It REALLY is Leos last hope for a life and I have to take it. Leo might need the proton therapy combined with a little bit of chemotherapy because this monster is so aggressive and can grow so fast!!
This is OUR TARGET NOW!!! 150,000gbp!!
We have been advised by Alder Hey we can book our flights there for the operation on the 8th February 2017.
If Leo has no complications we will need to fly to Oklahoma within 2 weeks after the operation.. firstly he will have an assessment and they will calculate dosage etc of the proton treatment before he begins which will be a week later....
The proton treatment will be for about 31 working days.......a large percentage of the money for the proton treatment will need to be paid for before we travel there!!!
WE HAVE ABOUT 3 WEEKS GUYS!!!!!!! PLEASE PLEASE PLEASE SHARE SHARE SHARE THE HELL OUT OF THIS....
IF WE CANNOT FUND THIS THEN LEO WILL HAVE TO HAVE CONVENTIONAL RADIOTHERAPY AND BE DESTINED FOR A LIFETIME OF DISABILITIES AND PROBLEMS...HE WILL NEVER BE ABLE TO LIVE ON HIS OWN OR DO ANYTHING FOR HIMSELF.......
With proton Leo can still progress, he will still have the chance to learn again, to move his right side, speak again, he wont have problems that will affect his organs in the future....
It is a no brainer.....we have to do this TEAM LEO!!!!! Let hit this target!!!!
28/01/17- DEVASTATING NEWS - ANOTHER 2 TUMOURS HAVE GROWN IN 5 WEEKS.
THE WORST NEWS POSSIBLE!! TEAM LEO NEEDS TO GET BIGGER THAN EVER AND HELP MORE THAN EVER BEFORE!
Another post that just breaks my heart and cripples me to even type! I apologize in advance for any swearing in this post.
Leo has another tumour!! possibly TWO...which have grown in the original tumour cavity. One is 1cm and the other 1.5cm, the radiologist cannot tell if there is a tiny connection between the two.
5 BLOODY WEEKS after his operation!!
Leo has been taken out of the immunotherapy trial with immediate effect. I think a couple of strings were pulled to give him his immunotherapy vaccine today before we got given the official results as once we had them he would not be viable for any more vaccines.
ACTION PLAN- The radiologist seems to think the game is not over yet....Leo needs another operation as soon as possible. Obviously he cannot have this in Pamplona as he is not included in the trial anymore. Looks like we need to go back to Alder Hey for this operation asap.
The ONLY thing that he thinks can save Leo and still give him a relatively normal life but it also has to be quick is proton therapy.
There is no point Leo having the operation, then waiting 5 weeks later to start proton as another tumour could grow and we will be back where we are right now!
He can begin proton therapy as soon as two weeks after the operation providing he is good like after the last operation.
The radiologist thinks that it is good it is growing in the original tumour bed and he seems to think that proton will work for him.
WE NEED TO RAISE FUNDS FAST!!! PLEASE PLEASE KEEP ADDING ALL YOUR FRIENDS.....We are probably looking at starting proton within the next 3 weeks depending on funding.
Im emailing Alder Hey now to see when he can have the operation.
It has to be full steam ahead, there is no time at all.....
Sonia is working on getting all reports here translated into English and she is emailing Mr Mallucci the neurosurgeon at Alder Hey Leos scan from today.
Loads of people have recommended the proton centre in Oklahoma so Im going to try and call Dr Chang today to try and get prices.
It is difficult to get accurate prices without all the reports but we know from speaking to others with experience we are talking a hell of a lot of money, plus accommodation and travelling expenses.
It makes me so angry that money should come into the life of a child, but to us and many Leos life is priceless, there will never be another Leo the Lion.
Please please..if you have any contacts with newspapers, magazines, reporters etc....we need serious help.
We need to jump on the train in an hour to come back so I cant do too much without a good internet connection, any help will be greatly appreciated!!
I bloody knew with my gut instinct something wasnt right!!!! ALWAYS GO WITH YOUR GUT!! If we had waited until the MRI in March then Leo might not still be here now, or he might be classified terminal....MOTHERS know best!!!
People tell me to be positive about Leo but when he keeps getting screwed over so many times......it really is becoming impossible!!
The minimum they could be growing is maybe half a cm a week!!!!
Thank you all so much!!
Fuck this monster, you are seriously going down.....Team Leo is going to fight you too the end.
Update 24/01/2017
IDEAS NEEDED AND HELP! - IMPORTANT UPDATE
So Leo has to get an MRI done on Friday in Pamplona, he has been booked in at 9am. This MRI isnt covered in the trial, we need to pay 1200 euro for this unfortunately. We will get the results on Friday also.
OK, Here goes......Leo was discussed in a meeting yesterday in Pamplona. The radiologist believes radiation on the full spine and brain should be performed. He thinks proton beam therapy is the way to go and we will discuss it more in depth with him on Friday.
Proton beam will do the least damage to Leo and he will still be able to enjoy a full life with the ability to learn/walk again and be a normal child.
An MRI scan needs to be done also in order to see if there is any tumours on the spine, as this would affect the dosage of the proton therapy.
This treatment for proton is private and hopefully soon I will have more exact prices. All we know at the moment is that it costs in the tens of thousands of euros!!. We are looking at the proton clinic in Germany and Leo would still continue with the immunotherapy treatment in Pamplona to cover all bases.
We need to start to getting ideas for fundraising this treatment which could save his life and stop this monster ever coming back into his head again. This is the least that Leo deserves.
It is such a sad sad world we live in when money comes into the equation of deciding whether a kid survives or not, but unfortunately that is the way it is nowadays.
If anyone has any fundraising ideas please let me know and I will start a list and brainstorming.
Please share Leos page and invite your friends as members, that one person could really make the difference to the target we need to achieve.
I understand it is hard for people to feel emotionally attached to Leo if you have never met him in person....but, he is just an innocent pure child who hasn´t even been given the chance to really live yet.
I understand that some people think after what he has gone through he must be severely disabled or like a vegetable...but he really is not...he is all there in his mind and he is still the little same cheeky little boy who continues to defeat the odds.
Leo is one in a million, he progresses day by day, he is stronger than most of us will ever be, and he will recuperate, I am sure of it....he just needs a bit of help from us all to give him the chance.
Leo is a young happy child,who deserves a real chance to life a full life, he is an amazing human being who has gone through so much, he has never given up fighting and will continue to teach people so much about life and that the little things do not matter anymore.
He is a very loved little brother, a son, a grandchild, a cousin and loved dearly by so many people.
I can swear that if you meet him in person, he will inspire you so much....and not one person who has met Leo could ever say to give up on him especially when you see how determined and strong he really is.
He captures everyones heart and he still continues to go through everything, all these hurdles, challenges with a huge ass smile on his little face! A smile that just melts everyones hearts.
Please just think if it was your child, brother, grandchild etc....I am sure everyone would fight till the end to give an innocent child a chance.....
PLEASE SHARE SHARE SHARE....and let me know about fundraising ideas.
Update 01/12/2016
The Cancer is Back......
It is with unbelievable sadness we have to update Leo's page with the worst news possible.
Leo's last MRI scan dated 21/11/2016 showed a 1cm tumor situated in the same area as before. We were informed of the results on Tuesday 29/12/2016.
The Nuero sugeon and Leo's oncologist have both confirmed this is the sPNET tumor returned.
Our options at this time are unknown.
We are waiting for replys from Alderhey Hospital, Prague Proton therapy centre and University of Florida amoung others.
We will leave no stone unturned,
We are confident Leo can beat this, but, he needs you!
We now need to prepare for the war against this monster in Leo's head. The sPNET is a VERY aggressive tumor which grows very rapidly, the last tumor grew at 1cm every week.
There is really no time to waste.
Please Please donate whatever you can, we appriciate Christmas is a very hard time financially but your Donation really will be giving Leo the gift of life.
Leo is 3 years old and has fought through, two very rare agressive cancerous brain tumours, undergone 2 major brain operations, intensive chemotherapy, fought off septicemia which attacked his lungs and liver and various other complications in the last 9 months.
He now has hemiplegia which means he is partially paralysed in the right hand side, loss of speech and has a lot of brain damage please help towards his rehabilitation so he can live the life he deserves and the probability of a relapse is still high.
Who is Leo?
Leo was a happy, cheerful and beautiful 2.5 year old boy, running riot everywhere, with so much love and affection oozing out of him.
He was such a loving little boy and many people commented on his loving nature. This is one of the reasons he has hit the hearts of hundreds and hundreds of people.
He was known as the little ´brown eyed boy´ who never stopped smiling!
He has now become an inspiration to so many people.
Leo the Lion´s Journey in a nutshell.
Leo was a happy 2.5 year old boy without a care in the world. During the summer of 2015 he began vomiting and being very tired every day. The doctors reassured us that everything was ok and told us that he had a stomach virus and prescribed vomiting medication. We went to the doctors and the emergencies 8 times in the space of 8 weeks to express our concerns as we knew something was not right with him but the doctors dismissed our worries.
On September 2nd 2015 Leo lost some movement in his right hand,
We took Leo to the hospital emergency department and eventually after a few debates as some doctors thought that Leo was just being lazy not moving his hand, but then luckily one doctor ordered a CT scan. The scan revealed a large tumour measuring about 9.5cm in Leos left brain.
Immediately we were sent to another hospital an hour away and told that it was cancer and he could need an operation the same day. To cut a long story short, The doctors were not going to operate on Leo until the following week when some inflammation had gone down in his head but Leo ended up having an emergency operation after suffering from convulsions and a stroke 3 days after being admitted.
The operation was 6 hours long and we were told they did not know if Leo would survive the operation. Leo survived the operation but the extent of the damage done from the surgical intervention was unclear.
A few days later Leo looked like he was on the right road until he suddenly developed septicaemia, the infection attacked Leo’s lungs causing acute respiratory syndrome and also attacked his liver.
We were told that Leo would die in hours, it was the worst day of our lives.
The following day Leo was put on an artificial breathing machine, to the amazement of all the doctors his lungs recovered after just 24 hours.
Leo then eventually managed to fight the infection out of his body, stunning all of the medical staff with what they actually called a miracle. Leo did not cry until 3 weeks after the operation nor make any sounds or speak. He also had trouble swallowing and eventually after persistence only started eating pureed food.
A few days later at the hospital Leo was given an eye test and hearing test. The hearing test results were perfect but the eye test came back concluding that Leo was blind. The doctors said as the tumour was located in the left side of Leos head it affects the movement of the right side of the body, therefore Leo can only partially move his right arm and leg now.
His speech gradually began improving little by little but again as the left side of the brain contain the speaking functions this could also be a problem for him to recuperate. We believe that Leo can see something, we are not sure how much but for sure he does have some vision. The biopsy of the tumour eventually came back as non-cancerous immature teratoma tumour. The doctors concluded that Leo would not need further treatment.
Leo gradually improved little by little and eventually got permission to leave hospital for a weekend where we organized a welcome home party, bought new special furniture for him, gifts and everything.
The following week Leo had to return to hospital for a final MRI in order for the hospital to release the discharge papers. The doctors were speechless as the MRI revealed that the tumour had regrown in 7 weeks since the operation and was about 4cm in size already. They basically said they could give some chemotherapy but the chances were not good for him, they advised us that they could not operate as he would die in another brain operation.
I researched on the net and facebook groups for advice. Eventually a number of people recommended Alder Hey Hospital and a certain world renowned neurosurgeon. I managed to get into contact with a nurse from the hospital who showed the surgeon the MRI scan of Leo and he said that the tumour was easily operable. Within 2 days we flew to Alder Hey Hospital and met with the neurosurgery team.
Within 3 days of arriving Leo was operated on at Alder Hey Hospital. The second tumour was removed with the help of an intra-MRI.
The biopsy of the tumour came back as a very rare sPNET agressive type of brain cancer.
The survival of this type is only 20%. The doctors asked us if we wanted to put Leo through the treatment as the survival was very low and Leo had already suffered a lot.
We knew someone had to be in that 20% so we were no way going to give up on him now.
The chemo was the strongest dose they had, it was only 5 cycles. 3 strong chemo sessions and 2 high dose with stem cell transplants. We were told that in the 5.5 months of the chemo Leo would either be alive or not. It would not be the cancer that killed him it would be the chemo due to the high toxicity.
Leo struggled in his first session of chemo resulting in his skin breaking down and mouth. He was nearly admitted into ICU but he continued to fight with a smile on his face.
He breezed through the following sessions and completed all of the treatment.
His scans during the treatment were clear and also at the end of treatment it was still clear although there is a very high chance of the tumour coming back due to the agressivness of it and the size of the first one. If a replase does happen then treatment is very limited.
But, He did it!! he has fought through so much and has never ever shown any signs of giving up. He is such an inspiration and I am so proud to call him my son.
Due to the size of the tumours and the pressure put onto the brain Leo has a lot of brain damage. The doctors think that in time he should be able to recuperate but he will never be 100% again.
He is unable to speak now as the tumour was located in the speaking part of the brain. Due to the stroke he is unable to use his right side but little by little he is coming on. He cannot walk or move his right arm.
Now we have to focus on intensive rehabilitation to get Leo back so he does not miss anymore of his childhood that he has already....unfortunately this cost money.
In Spain the physio sessions are minimal and take months to even begin.
We have started private sessions, swimming sessions we have had to buy special equipment for Leo as we have not received anything from the Spanish social security system as yet.
Our little boy has suffered so much pain and he has always continued smiling despite what life has thrown at him.
Leo was just dealt a very very bad set of cards in this life and he has given it his all. It does not seem fair because of finances that he could never be given the chance to have a good life.
Leo has an older sister who is 8 years old called Sofia. She has been amazing through this journey but has suffered a lot emotionally also. We had to leave her in Spain when we fled to the UK to save Leo´s life.
No child deserves this.
How will the funds raised help Leo?
The doctors or us do not know how long Leo will take to recuperate but something that has been made clear is that it will be a long road to recovery.
* Leo will need a private physiotherapist for a long time in order for him to gradually regain movement in his right arm and leg. The social security service only provide the very basic services and sessions which is not many in Spain.
* Leo will need to learn to walk again.
* Leo will need a private speech therapist as he will need to learn to speak again properly as a young baby does.
* People have advised us that it would be beneficial for Leo to also see a child psychologist as they understand how the brain works and this knowledge could help with his recuperation process.
* As we do not know how much vision Leo actually has and the eye test results came back as zero. Leo will need to see an eye specialist.
* I have been living out of the UK for a few years and Leo was born in Spain. Leo is not entitled to receive NHS free treatment. The social security in Spain have agreed to pay the medical costs in the UK. If Leo relapses we do not know if Spain will cover anymore costs.
*Leo needs 24/7 care as he is unable to do anything himself, this means reducing work hours or getting somebody to help with Leo.
Unfortunately raising this sum is just the beginning of the journey. Following the procedures that Leo will undergo in America, he will require extensive rehabilitation treatment back in Spain. This comes at a further expense. For example, the physiotherapy he will need for at least three months, will cost £1000 per day! That's over £90,000 in total! And this is just the tip of the iceberg.
We are here to fight for Leo, and we will continue to fight by helping to fund these future medical provisions. I know this is of great comfort to both Leo and his family.
We cannot express how much we appreciate your kind support. Suffice it to say that your generous donations are helping to save this young boy's life - a lovely boy who shouldn't have to be going through such an ordeal - an ordeal that he has met and continues to meet with incredible bravery and grace.
Lots of love to you all xxx
WHAT IS THE PRICE ON LEOS LIFE.....SO WRONG BUT IT IS.....150,000 GBP.
I feel like a broken record but we need this TEAM LEO viral...bigger than ever!!
I have spoken Dr Chang in Oklahoma, this is the approx price which includes accommodation.
Dr Chang has already been in contact with the radiologist at Alder Hey Hospital and next week he will call Leos oncologist there.
Dr Chang has a lot of experience with sPNET and the kids he has treated have been in remission since....
It REALLY is Leos last hope for a life and I have to take it. Leo might need the proton therapy combined with a little bit of chemotherapy because this monster is so aggressive and can grow so fast!!
This is OUR TARGET NOW!!! 150,000gbp!!
We have been advised by Alder Hey we can book our flights there for the operation on the 8th February 2017.
If Leo has no complications we will need to fly to Oklahoma within 2 weeks after the operation.. firstly he will have an assessment and they will calculate dosage etc of the proton treatment before he begins which will be a week later....
The proton treatment will be for about 31 working days.......a large percentage of the money for the proton treatment will need to be paid for before we travel there!!!
WE HAVE ABOUT 3 WEEKS GUYS!!!!!!! PLEASE PLEASE PLEASE SHARE SHARE SHARE THE HELL OUT OF THIS....
IF WE CANNOT FUND THIS THEN LEO WILL HAVE TO HAVE CONVENTIONAL RADIOTHERAPY AND BE DESTINED FOR A LIFETIME OF DISABILITIES AND PROBLEMS...HE WILL NEVER BE ABLE TO LIVE ON HIS OWN OR DO ANYTHING FOR HIMSELF.......
With proton Leo can still progress, he will still have the chance to learn again, to move his right side, speak again, he wont have problems that will affect his organs in the future....
It is a no brainer.....we have to do this TEAM LEO!!!!! Let hit this target!!!!
28/01/17- DEVASTATING NEWS - ANOTHER 2 TUMOURS HAVE GROWN IN 5 WEEKS.
THE WORST NEWS POSSIBLE!! TEAM LEO NEEDS TO GET BIGGER THAN EVER AND HELP MORE THAN EVER BEFORE!
Another post that just breaks my heart and cripples me to even type! I apologize in advance for any swearing in this post.
Leo has another tumour!! possibly TWO...which have grown in the original tumour cavity. One is 1cm and the other 1.5cm, the radiologist cannot tell if there is a tiny connection between the two.
5 BLOODY WEEKS after his operation!!
Leo has been taken out of the immunotherapy trial with immediate effect. I think a couple of strings were pulled to give him his immunotherapy vaccine today before we got given the official results as once we had them he would not be viable for any more vaccines.
ACTION PLAN- The radiologist seems to think the game is not over yet....Leo needs another operation as soon as possible. Obviously he cannot have this in Pamplona as he is not included in the trial anymore. Looks like we need to go back to Alder Hey for this operation asap.
The ONLY thing that he thinks can save Leo and still give him a relatively normal life but it also has to be quick is proton therapy.
There is no point Leo having the operation, then waiting 5 weeks later to start proton as another tumour could grow and we will be back where we are right now!
He can begin proton therapy as soon as two weeks after the operation providing he is good like after the last operation.
The radiologist thinks that it is good it is growing in the original tumour bed and he seems to think that proton will work for him.
WE NEED TO RAISE FUNDS FAST!!! PLEASE PLEASE KEEP ADDING ALL YOUR FRIENDS.....We are probably looking at starting proton within the next 3 weeks depending on funding.
Im emailing Alder Hey now to see when he can have the operation.
It has to be full steam ahead, there is no time at all.....
Sonia is working on getting all reports here translated into English and she is emailing Mr Mallucci the neurosurgeon at Alder Hey Leos scan from today.
Loads of people have recommended the proton centre in Oklahoma so Im going to try and call Dr Chang today to try and get prices.
It is difficult to get accurate prices without all the reports but we know from speaking to others with experience we are talking a hell of a lot of money, plus accommodation and travelling expenses.
It makes me so angry that money should come into the life of a child, but to us and many Leos life is priceless, there will never be another Leo the Lion.
Please please..if you have any contacts with newspapers, magazines, reporters etc....we need serious help.
We need to jump on the train in an hour to come back so I cant do too much without a good internet connection, any help will be greatly appreciated!!
I bloody knew with my gut instinct something wasnt right!!!! ALWAYS GO WITH YOUR GUT!! If we had waited until the MRI in March then Leo might not still be here now, or he might be classified terminal....MOTHERS know best!!!
People tell me to be positive about Leo but when he keeps getting screwed over so many times......it really is becoming impossible!!
The minimum they could be growing is maybe half a cm a week!!!!
Thank you all so much!!
Fuck this monster, you are seriously going down.....Team Leo is going to fight you too the end.
Update 24/01/2017
IDEAS NEEDED AND HELP! - IMPORTANT UPDATE
So Leo has to get an MRI done on Friday in Pamplona, he has been booked in at 9am. This MRI isnt covered in the trial, we need to pay 1200 euro for this unfortunately. We will get the results on Friday also.
OK, Here goes......Leo was discussed in a meeting yesterday in Pamplona. The radiologist believes radiation on the full spine and brain should be performed. He thinks proton beam therapy is the way to go and we will discuss it more in depth with him on Friday.
Proton beam will do the least damage to Leo and he will still be able to enjoy a full life with the ability to learn/walk again and be a normal child.
An MRI scan needs to be done also in order to see if there is any tumours on the spine, as this would affect the dosage of the proton therapy.
This treatment for proton is private and hopefully soon I will have more exact prices. All we know at the moment is that it costs in the tens of thousands of euros!!. We are looking at the proton clinic in Germany and Leo would still continue with the immunotherapy treatment in Pamplona to cover all bases.
We need to start to getting ideas for fundraising this treatment which could save his life and stop this monster ever coming back into his head again. This is the least that Leo deserves.
It is such a sad sad world we live in when money comes into the equation of deciding whether a kid survives or not, but unfortunately that is the way it is nowadays.
If anyone has any fundraising ideas please let me know and I will start a list and brainstorming.
Please share Leos page and invite your friends as members, that one person could really make the difference to the target we need to achieve.
I understand it is hard for people to feel emotionally attached to Leo if you have never met him in person....but, he is just an innocent pure child who hasn´t even been given the chance to really live yet.
I understand that some people think after what he has gone through he must be severely disabled or like a vegetable...but he really is not...he is all there in his mind and he is still the little same cheeky little boy who continues to defeat the odds.
Leo is one in a million, he progresses day by day, he is stronger than most of us will ever be, and he will recuperate, I am sure of it....he just needs a bit of help from us all to give him the chance.
Leo is a young happy child,who deserves a real chance to life a full life, he is an amazing human being who has gone through so much, he has never given up fighting and will continue to teach people so much about life and that the little things do not matter anymore.
He is a very loved little brother, a son, a grandchild, a cousin and loved dearly by so many people.
I can swear that if you meet him in person, he will inspire you so much....and not one person who has met Leo could ever say to give up on him especially when you see how determined and strong he really is.
He captures everyones heart and he still continues to go through everything, all these hurdles, challenges with a huge ass smile on his little face! A smile that just melts everyones hearts.
Please just think if it was your child, brother, grandchild etc....I am sure everyone would fight till the end to give an innocent child a chance.....
PLEASE SHARE SHARE SHARE....and let me know about fundraising ideas.
Update 01/12/2016
The Cancer is Back......
It is with unbelievable sadness we have to update Leo's page with the worst news possible.
Leo's last MRI scan dated 21/11/2016 showed a 1cm tumor situated in the same area as before. We were informed of the results on Tuesday 29/12/2016.
The Nuero sugeon and Leo's oncologist have both confirmed this is the sPNET tumor returned.
Our options at this time are unknown.
We are waiting for replys from Alderhey Hospital, Prague Proton therapy centre and University of Florida amoung others.
We will leave no stone unturned,
We are confident Leo can beat this, but, he needs you!
We now need to prepare for the war against this monster in Leo's head. The sPNET is a VERY aggressive tumor which grows very rapidly, the last tumor grew at 1cm every week.
There is really no time to waste.
Please Please donate whatever you can, we appriciate Christmas is a very hard time financially but your Donation really will be giving Leo the gift of life.
Leo is 3 years old and has fought through, two very rare agressive cancerous brain tumours, undergone 2 major brain operations, intensive chemotherapy, fought off septicemia which attacked his lungs and liver and various other complications in the last 9 months.
He now has hemiplegia which means he is partially paralysed in the right hand side, loss of speech and has a lot of brain damage please help towards his rehabilitation so he can live the life he deserves and the probability of a relapse is still high.
Who is Leo?
Leo was a happy, cheerful and beautiful 2.5 year old boy, running riot everywhere, with so much love and affection oozing out of him.
He was such a loving little boy and many people commented on his loving nature. This is one of the reasons he has hit the hearts of hundreds and hundreds of people.
He was known as the little ´brown eyed boy´ who never stopped smiling!
He has now become an inspiration to so many people.
Leo the Lion´s Journey in a nutshell.
Leo was a happy 2.5 year old boy without a care in the world. During the summer of 2015 he began vomiting and being very tired every day. The doctors reassured us that everything was ok and told us that he had a stomach virus and prescribed vomiting medication. We went to the doctors and the emergencies 8 times in the space of 8 weeks to express our concerns as we knew something was not right with him but the doctors dismissed our worries.
On September 2nd 2015 Leo lost some movement in his right hand,
We took Leo to the hospital emergency department and eventually after a few debates as some doctors thought that Leo was just being lazy not moving his hand, but then luckily one doctor ordered a CT scan. The scan revealed a large tumour measuring about 9.5cm in Leos left brain.
Immediately we were sent to another hospital an hour away and told that it was cancer and he could need an operation the same day. To cut a long story short, The doctors were not going to operate on Leo until the following week when some inflammation had gone down in his head but Leo ended up having an emergency operation after suffering from convulsions and a stroke 3 days after being admitted.
The operation was 6 hours long and we were told they did not know if Leo would survive the operation. Leo survived the operation but the extent of the damage done from the surgical intervention was unclear.
A few days later Leo looked like he was on the right road until he suddenly developed septicaemia, the infection attacked Leo’s lungs causing acute respiratory syndrome and also attacked his liver.
We were told that Leo would die in hours, it was the worst day of our lives.
The following day Leo was put on an artificial breathing machine, to the amazement of all the doctors his lungs recovered after just 24 hours.
Leo then eventually managed to fight the infection out of his body, stunning all of the medical staff with what they actually called a miracle. Leo did not cry until 3 weeks after the operation nor make any sounds or speak. He also had trouble swallowing and eventually after persistence only started eating pureed food.
A few days later at the hospital Leo was given an eye test and hearing test. The hearing test results were perfect but the eye test came back concluding that Leo was blind. The doctors said as the tumour was located in the left side of Leos head it affects the movement of the right side of the body, therefore Leo can only partially move his right arm and leg now.
His speech gradually began improving little by little but again as the left side of the brain contain the speaking functions this could also be a problem for him to recuperate. We believe that Leo can see something, we are not sure how much but for sure he does have some vision. The biopsy of the tumour eventually came back as non-cancerous immature teratoma tumour. The doctors concluded that Leo would not need further treatment.
Leo gradually improved little by little and eventually got permission to leave hospital for a weekend where we organized a welcome home party, bought new special furniture for him, gifts and everything.
The following week Leo had to return to hospital for a final MRI in order for the hospital to release the discharge papers. The doctors were speechless as the MRI revealed that the tumour had regrown in 7 weeks since the operation and was about 4cm in size already. They basically said they could give some chemotherapy but the chances were not good for him, they advised us that they could not operate as he would die in another brain operation.
I researched on the net and facebook groups for advice. Eventually a number of people recommended Alder Hey Hospital and a certain world renowned neurosurgeon. I managed to get into contact with a nurse from the hospital who showed the surgeon the MRI scan of Leo and he said that the tumour was easily operable. Within 2 days we flew to Alder Hey Hospital and met with the neurosurgery team.
Within 3 days of arriving Leo was operated on at Alder Hey Hospital. The second tumour was removed with the help of an intra-MRI.
The biopsy of the tumour came back as a very rare sPNET agressive type of brain cancer.
The survival of this type is only 20%. The doctors asked us if we wanted to put Leo through the treatment as the survival was very low and Leo had already suffered a lot.
We knew someone had to be in that 20% so we were no way going to give up on him now.
The chemo was the strongest dose they had, it was only 5 cycles. 3 strong chemo sessions and 2 high dose with stem cell transplants. We were told that in the 5.5 months of the chemo Leo would either be alive or not. It would not be the cancer that killed him it would be the chemo due to the high toxicity.
Leo struggled in his first session of chemo resulting in his skin breaking down and mouth. He was nearly admitted into ICU but he continued to fight with a smile on his face.
He breezed through the following sessions and completed all of the treatment.
His scans during the treatment were clear and also at the end of treatment it was still clear although there is a very high chance of the tumour coming back due to the agressivness of it and the size of the first one. If a replase does happen then treatment is very limited.
But, He did it!! he has fought through so much and has never ever shown any signs of giving up. He is such an inspiration and I am so proud to call him my son.
Due to the size of the tumours and the pressure put onto the brain Leo has a lot of brain damage. The doctors think that in time he should be able to recuperate but he will never be 100% again.
He is unable to speak now as the tumour was located in the speaking part of the brain. Due to the stroke he is unable to use his right side but little by little he is coming on. He cannot walk or move his right arm.
Now we have to focus on intensive rehabilitation to get Leo back so he does not miss anymore of his childhood that he has already....unfortunately this cost money.
In Spain the physio sessions are minimal and take months to even begin.
We have started private sessions, swimming sessions we have had to buy special equipment for Leo as we have not received anything from the Spanish social security system as yet.
Our little boy has suffered so much pain and he has always continued smiling despite what life has thrown at him.
Leo was just dealt a very very bad set of cards in this life and he has given it his all. It does not seem fair because of finances that he could never be given the chance to have a good life.
Leo has an older sister who is 8 years old called Sofia. She has been amazing through this journey but has suffered a lot emotionally also. We had to leave her in Spain when we fled to the UK to save Leo´s life.
No child deserves this.
How will the funds raised help Leo?
The doctors or us do not know how long Leo will take to recuperate but something that has been made clear is that it will be a long road to recovery.
* Leo will need a private physiotherapist for a long time in order for him to gradually regain movement in his right arm and leg. The social security service only provide the very basic services and sessions which is not many in Spain.
* Leo will need to learn to walk again.
* Leo will need a private speech therapist as he will need to learn to speak again properly as a young baby does.
* People have advised us that it would be beneficial for Leo to also see a child psychologist as they understand how the brain works and this knowledge could help with his recuperation process.
* As we do not know how much vision Leo actually has and the eye test results came back as zero. Leo will need to see an eye specialist.
* I have been living out of the UK for a few years and Leo was born in Spain. Leo is not entitled to receive NHS free treatment. The social security in Spain have agreed to pay the medical costs in the UK. If Leo relapses we do not know if Spain will cover anymore costs.
*Leo needs 24/7 care as he is unable to do anything himself, this means reducing work hours or getting somebody to help with Leo.
Organiser
Karen Keefe
Organiser
Vera, AN