Help Freddie beat brain cancer!

Hi my names Emma,

My baby boy Freddie (aged 2) has recently been diagnosed of having a brain tumour which thankfully successfully was all removed but then to find out my baby’s real battle was about to begin,

Freddie then got diagnosed of brain cancer and he will be receiving chemotherapy for 9 months.

Freddie also has a rare disease called pseudohparathyroidisim which effects his growth and development. Freddie is the first cancer patient at Alder hey with a GNAS mutation, which makes his treatment a lot more tense and difficult.

I took Freddie numerous times to a&e and his local GP to keep getting told he has some sort of virul infenction, ear infenction, tummy bug etc… the list goes on! I showed them all videos pictures recordings of how Freddie has been.

Freddie also fell straight onto his face in front of doctors, vomiting in there waiting rooms.

His blood pressure/heart rate was obvious something was wrong but we still got dismissed on 11 occasions and 2 over night stays.

I got treated awfully by doctors saying my son wasn’t a emergency and I shouldn’t be back, I got told not to bring my son back as he has ASD it stressed him out to much.

It has been a very distressing/traumatising time to even get someone to listen to me that my baby was very sick.

After 4 weeks of back and forth to doctors who dismissed Freddie and his alarming signs,

I didn’t know what else to do no one would help my baby.

I got in touch with his rare disease specialist , I emailed her the same videos/pictures I have shown other health professionals. She then got freddie admitted into Hospital that day straight away which then led to a mri to find out the real cause of why my poor baby was so unwell.

The position the tumour was in pushed every bit of Freddie’s brain to the front of his head squashing it which caused the fluid to then just get blocked and fill up in his ventricles

Freddie was really sick, he vomited every morning, he would scream through every night whilst he slept, he couldn’t walk anymore much as he tried he would fall to the floor

His right eye turned all the way in

He was unresponsive just seemed “out of it”

Freddie lost his balance and therefore can not walk anymore, he is slowly finding his feet again but needs a lot of help getting back being able to stand by him self keep balance and learn to walk again. Freddie goes to physio therapy for extra help.

Freddie is very very lucky to still be here, I hate to think what could of happened if he still was not to be seen.

I have lost every trust and confidence in local GPs and Alder hey a&e department the people we “trust” to go to when your child is sick.

Alder hey main hospital itself I cannot fault every single doctor/nurse has been amazing and got Freddie where he is today before he starts treatment in 7 days and I am so grateful for them without them my baby would not be with us today.

Freddie is going to need a lot of help in all areas to achieve his milestones and help him get back on track to being a 2 year old happy boy who has his whole life ahead of him.

I’m asking for small donations towards the costs of physio therapy equipment for at home to support Freddie, and also just to give Freddie extra of everything as this little boy has missed out on so so much in his 2 years of life due to being back and forth hospitals since he was 2 weeks old and the restrictions of Covid-19/lockdown.

With his treatment being on going am also needing extra funds for transport for myself as Freddie cannot do public transport he cannot be in public spaces/transport due to picking up germs/bugs,

I also want to raise money for more research for brain cancer that will go to Alder hey.

I am also going to be setting up fundraising events to help support the cost of the research, give to charity to help other families who are going through the same at this awful time.

I promise to keep all updates throughout Freddie’s journey.

Thank you all for reading, please can you say prayers for my innocent baby boy xx