Just4Children are fundraising to improve Elliot’s physical and cognitive development to work towards a chance of him living independently.
I am mummy to this amazing little boy, Elliot, the sweetest poppet you will ever lay eyes upon! He lives at home with me his Mummy, his wonderful daddy, fluffy dog Milo, and the most caring big brother in the world, Isaac!
Elliot is aged 1 from Loughborough. He was born via IVF, was born with congenital abnormalities in his brain which were not picked up during pregnancy. He was born with unexplained low birth weight, and then failed to gain substantial weight in the following weeks, despite numerous professionals being involved and countless other concerns raised with the GP. In April 2022 Elliot was admitted to A&E with dangerously low oxygen; he had caught 2 cold infections and this has developed into Bronchiolitis. He was VERY poorly! Once the doctors had this under control, they listened to our concerns such as lack of eye contact, being generally very floppy, poor head control at 10 weeks old, strange wrist flexion, feeding issues. They agreed there might be something going on and offered further investigations.
However, these did not happen until a second hospital visit in June with another bout of bronchiolitis. This time he had an MRI scan (amongst various other tests and investigations) which indicated numerous under developments in his brain, looking like a ‘Tubulinopathy’, but to be confirmed by genetic testing.
In the meantime, we were referred to a number of different departments for various investigations and therapies. Lots of these referrals took MONTHS and some still have not happened.
Fast forward to now to March 2023. Elliot has a permanent NG tube to make sure he can stay fed and hydrated due to a poor suck swallow reflex, he has glasses to help his sight but his condition means it is his brain not understanding what it is he is seeing (CVI). He has a private physiotherapist because the NHS provision just is not enough for him to make decent progress when he can only be seen as regularly as every 6 weeks, he attends Conductive Education weekly run by an amazing charitable team (Steps). Also, in this time, I have had to leave my full time job to care for him.
NHS provisions are under resourced, disability and carers allowance do not replace a full time wage; yet Elliot needs regular therapies to progress and reach his potential!
We want to be able to offer Elliot various regular and intensive private therapies which the NHS will not cover including regular physiotherapy, dynamic movement intervention, hydrotherapy, speech and language therapy for communication. He will also need some equipment as he gets older which will aid him in progressing his motor skills and enable him to play! As you can imagine, this is expensive; but necessary!
Unfortunately, we cannot provide this for him alone, despite our best efforts and our motivation to do so! I am constantly researching charities and grants to help us, but in this current climate lots of people are needing more help than normal and these are extremely hard to come by.
We are turning to the public to assist us to help Just4Children while his brain has the neuro plasticity to learn as much as possible which will inevitably slow down by the time he is 2.5 years old!
There is no single big thing that can help him, just regular little things over the next few years, and we are hoping that regular little bits of help from the generous people in this world can help us enable him to access these therapies and progress as much as possible to live as independent a life as possible with full of joy and fulfilment!
If anyone wants to do any fundraising, we would be SO grateful if you could direct it towards our little Elliot boy! We are very much relying on the kindness and generosity of strangers so please share far and wide!
Thanks for reading his story.
You can keep up with his development on Instagram
