Jack is aged 4 & was diagnosed with 1p36 chromosome deletion syndrome at just 10 months old. This followed investigations after epileptic seizures at just 6 weeks old, including CT & MRI scans, genetic blood tests, EEG & many months on wards either at Royal Lancaster Infirmary, Royal Preston Hospital & Royal Manchester Childrens hospital. He had a repeat brain scan at Alder Hey in August 2016 to determine if there had been any changes, progression or deterioration however this showed to be the same as before .
Common problems with the condition include visual, hearing & speech problems, hypotonia, epilepsy, global developmental delay & dysphasia. All of which Jack struggles with. He has bilateral cortical dysplasia of frontal lobes & further to this was registered as severely visually impaired at just 21 months old.
He can't do much in terms of mobility, he doesn't roll, crawl or walk. He has no coordination & needs 24/7 care for everything. I his mum had to resign from my post at the local hospital to be able to care for him full time.
He is massively involved with physiotherapy, occupational therapy, speech & language therapy plus Audiology, ENT, Ophthalmology, Neurology, Genetists, & dietitians from the local & regional hospitals.
He underwent surgery for a gastrostomy to replace a nasal gastric tube he had in situ for around 12 months as he has difficultly swallowing & it was unknown how much fluid/foods were flowing into his lung capacity.
The local professionals who are involved with Jacks care had suggested he have relevant adaptions made in our home to accommodate him with his life-long problems. Certain equipment like a through-floor lift will be required to enable him access upstairs, along with disabled facilities in a shower/bath area. All this amounts to ridiculous figures of which the council have only proposed to help by less than half. We need to raise further funds to enable us to have the relevant & accurate equipment for him within our home. We held a family fun day in May 2014 for which this is only a fraction of the funds we need to meet the cost of the work to be carried out. So many people have offered to help with buildings &/or designs but it's the actual fees that will be incurred that will need to be paid for. Without your help we won't be able to do this. Any donation made for Jack would be massively helpful & so greatly received. We aim to raise £5000 but anything more would be amazing! Our eternal thanks in advance!
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- Roxanne Hammond
- Terri King
- Chris Ohare
- Deborah Urquhart
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