Just4children are fundraising for Archie to be able to access therapies and specialist equipment to further improve Archie’s mobility and home life to his full potential.
Archie is now 2 and a half years old from Chester. He was born at 25 weeks weighing just 1lbs 5oz spending 107 days in the nicu and coming home on oxygen after eye surgery for ROP.
We presumed Archie would be fine but at around 10 months old we started to see that he still wasn’t reaching milestones expected. After months of fighting to be heard doctors agreed that Archie has global development delay and that his visual impairment would also be a factor.
Archie is still unable to sit unaided, stand walk or talk but he does like a good babble. His cognitive and developmental age is around 5 months old. He now has sensory processing disorder which has led to difficulties feeding and means he is fed via a nasal gastric tube until he has surgery for a mickey button this October. Archie has also recently been diagnosed as a Swan meaning he has a syndrome without a name and we are going through genetic testing for answers after being trialed on the whole genome sequence.
When you give birth to your child and start raising them you don’t ever expect to hear that your child will have disabilities and that no health professional can really tell you what their quality of life will be or that they will need specialist chairs and beds.
We currently are under NHS physio and OT services. We also see a consultant for opthalmology, neurology and a geneticist, audiology and a dietician. So, we have a very busy schedule most weeks with appointments. Due to all this we need lots of different equipment and therapies to hopefully give Archie a happy fulfilled life and any monies raised will help us provide these.
Thank you so much for taking the time to read Archie’s Journey.