Sonny’s Story!
Donation protected
***I regret to inform you that Sonny sadly grew his angel wings early hours on the 29th July. We are all struggling to believe this has happened.
“The strongest angel, the warrior who fought, the child who took all that was thrown his way in his stride... The baby boy with the brightest blue eyes, the personality that lightened up a room... Little boy who captured the hearts of everyone. That little boy who grew tired when a illness was to big for him to fight... The little boy who I am proud to forever call my son” - beautiful words from Mum at this hard time.
All donations are still appreciated and will go towards the family in their time of need.
We cannot believe he has gone but we know he is with us every moment of every day.***
Hello,
As most of you will know from following Sonny’s personal page ‘Sonny: The boy with a big heart!’ he really hasn’t had the best start in life. Diagnosed with Congenital Heart Disease and DiGeorge Syndrome at my sister’s 20 week scan she was told we were looking at being in and out of hospital with Sonny for up to a year. He turned one on the 14th June this year and he still has never been home. In fact he has been in ICU for over 300 days.
Over the year, Sonny has faced a number of heart wrenching operations with his Mum and Dad at his side ever step of the way including open heart surgery at two weeks old in which he haemorrhaged sending him in his first of many cardiac arrests. He’s had a pace maker fitted to help his little ticker keep a regular beat and has recently had a tracheotomy fitted to help him breathe alone.
Before this he had surgery on his bowel but there was a complication during surgery causing further complex issues for Sonny. On reconnecting his bowel last week further problems arose and Sonny very unfortunately started to deteriorate whilst having sepsis.
Further tests were carried out including a bone marrow biopsy done and the results came back positive for a rare blood disease called Haemophagocytic lymphohistiocytosis or HLH for short.
HLH is a life threatening condition in which the immune system begins to damage the patient’s own tissues and organs, including the liver, brain and bone marrow where blood is made. This disease is fatal meaning treatment is incredibly important. Usually patients are treated with steroids or chemotherapy but unfortunately it has been said that Sonny is just too poorly for chemotherapy but further meetings are going ahead to see what is in his best interests for a quality of life.
My reason for setting up this GoFundMe page is because we are unaware of how many days we have left with Sonny, sadly our time seems numbered but we need to make the most of our time with him regardless. So, with any kind donation, my Sister is going to be able to buy sensory items which will help to soothe Sonny. She will be able to create some memorable items for the family like castings, jewellery items etc. Sonny also has a big brother (Alex, 5)and sister (Nyla, 6) and this is by no means an easier ride for them either so any extra monies that are raised will help towards taking them for days out and making this experience as fun as it can be meaning they are not stuck inside the hospital every weekend. And cover any other expenses during this sad time.
If I could very kindly ask you to share this post, it would mean the world to us as a family. Any donations are appreciated, no matter how big or small - it really does help!
We all believe that you’ve got this little man and we’re praying for a miracle, you’ve fought this far, we all know you’ve still got it in you and we’re rooting for you - the strongest little boy I know!
We love you Sonny Lewis Cotgrave xxx
“The strongest angel, the warrior who fought, the child who took all that was thrown his way in his stride... The baby boy with the brightest blue eyes, the personality that lightened up a room... Little boy who captured the hearts of everyone. That little boy who grew tired when a illness was to big for him to fight... The little boy who I am proud to forever call my son” - beautiful words from Mum at this hard time.
All donations are still appreciated and will go towards the family in their time of need.
We cannot believe he has gone but we know he is with us every moment of every day.***
Hello,
As most of you will know from following Sonny’s personal page ‘Sonny: The boy with a big heart!’ he really hasn’t had the best start in life. Diagnosed with Congenital Heart Disease and DiGeorge Syndrome at my sister’s 20 week scan she was told we were looking at being in and out of hospital with Sonny for up to a year. He turned one on the 14th June this year and he still has never been home. In fact he has been in ICU for over 300 days.
Over the year, Sonny has faced a number of heart wrenching operations with his Mum and Dad at his side ever step of the way including open heart surgery at two weeks old in which he haemorrhaged sending him in his first of many cardiac arrests. He’s had a pace maker fitted to help his little ticker keep a regular beat and has recently had a tracheotomy fitted to help him breathe alone.
Before this he had surgery on his bowel but there was a complication during surgery causing further complex issues for Sonny. On reconnecting his bowel last week further problems arose and Sonny very unfortunately started to deteriorate whilst having sepsis.
Further tests were carried out including a bone marrow biopsy done and the results came back positive for a rare blood disease called Haemophagocytic lymphohistiocytosis or HLH for short.
HLH is a life threatening condition in which the immune system begins to damage the patient’s own tissues and organs, including the liver, brain and bone marrow where blood is made. This disease is fatal meaning treatment is incredibly important. Usually patients are treated with steroids or chemotherapy but unfortunately it has been said that Sonny is just too poorly for chemotherapy but further meetings are going ahead to see what is in his best interests for a quality of life.
My reason for setting up this GoFundMe page is because we are unaware of how many days we have left with Sonny, sadly our time seems numbered but we need to make the most of our time with him regardless. So, with any kind donation, my Sister is going to be able to buy sensory items which will help to soothe Sonny. She will be able to create some memorable items for the family like castings, jewellery items etc. Sonny also has a big brother (Alex, 5)and sister (Nyla, 6) and this is by no means an easier ride for them either so any extra monies that are raised will help towards taking them for days out and making this experience as fun as it can be meaning they are not stuck inside the hospital every weekend. And cover any other expenses during this sad time.
If I could very kindly ask you to share this post, it would mean the world to us as a family. Any donations are appreciated, no matter how big or small - it really does help!
We all believe that you’ve got this little man and we’re praying for a miracle, you’ve fought this far, we all know you’ve still got it in you and we’re rooting for you - the strongest little boy I know!
We love you Sonny Lewis Cotgrave xxx
Organizer and beneficiary
Samiee Kate Williams
Organizer
Amy Cotgrave
Beneficiary