Just4Children are raising money to help Brody have access to a WAV car, to provide specialist equipment and therapy and to make adaptions to his home so Brody can live safely and comfortably.
We have 3 year old identical twins, Myles and Brody. They are aged 3 from Washington near Sunderland.
After being born at 33+3 weeks via cat 1 emergency c section, Brody was really poorly in NICU. They knew what was wrong, but they didn’t know why or what was causing it and were struggling to treat him. After 5 days, he seemed to recover, and at 24 days, both boys were discharged as healthy.
Over the course of the next 5 months, Brody’s feeding deteriorated. He struggled to latch when breastfeeding and didn’t seem to know what to do with a bottle teat. After many doctor appointments, tears and sleepless nights, at the end of August, he was admitted to hospital for observation. After 4 days he was discharged and I was told a follow up appointment would be sent through the post.
On 15th September, I walked into an appointment without Tom, to be told Brody’s neonatal consultant suspected he had brain damage. I was floored. Never in our wildest dreams were we expecting to hear that.
At the end of the month, Brody was admitted and had an NG tube fitted. For the first time in months, our tiny boy had a tummy full of milk and was content. In October, at another consultant appointment, cerebral palsy was first mentioned and after a horrendous Christmas with a very distressed baby and numerous a&e visits because we knew something was wrong. Brody was eventually sent for an EEG, where it became very apparent he was having extremely dangerous seizures. He was admitted to hospital as an emergency and started on a high dose of steroids. On 15th February 2022, Brody had an MRI which showed the extent of his brain damage. The vast majority of his brain is filled with cerebral fluid.
He was officially diagnosed with bilateral spastic dystonic cerebral palsy and infantile spasms. At a separate appointment, his ophthalmology consultant explained his visual cortex was so damaged, that Brody would be registered as severely sight impaired.
In October 2022, Brody underwent gastrostomy surgery meaning he is now fed via MicKey button straight into his stomach. We had a fairly uneventful 11 months, although Brody’s seizures continued to cause problems despite being on 3 different anti seizure meds, and in September 2023, he was diagnosed with Lennox-Gastaut Syndrome. This essentially means Brody has epilepsy which can be very difficult to control with medication. Brody has just been accepted into a programme where he will be taking medical grade CBD to help with his seizures and we are really hopeful it will make a difference.
Brody has also started to have Botox into his adductors to relax his muscles and slow down the migration of his hip, which at his last xray in July 2023, was already 17% out of socket.
As a result of Brody’s high care needs, I ended up giving up an almost 10 year career as a primary school teacher meaning our personal fundraising efforts are limited.
We are wanting to start fundraising for Just4Children to provide everything medical he will need in the near to distant future.
We will get assistance via mobility payments to get a Wheelchair Accessible Vehicle (WAV) suitable for Brody, but will need a large deposit as a down-payment. We know that eventually, we will need to make adaptions to our house in order to have Brody live safely with us at home. We want Brody to continue to access therapies designed to help him thrive. We are also aware that the bigger Brody gets, the more equipment he will need to live comfortably. This will include a specialist bed and electric wheelchair amongst other things.
While some of these may not be immediate needs for our boy, we know that a lifetime of fundraising is needed to make sure that when the time comes, we have funds available to get him everything he needs.
Follow Brody ion Facebook
