About Finley

Finley is 2 years old he was born on the 7th February 2006, at around 4 months old I began to have concerns about his development and began to talk to the Health Visitors, by the time he was due to have his 7 month check I took him to see his GP and he was referred to see a Consultant Paediatric Neurologist in October last year. We came away after having seen him with our concerns confirmed.  At the moment all the specialists are not sure what is wrong with Finley but what they are saying is that they think he has a form of rare brain and central nervous system disorder.

Finley has Hypotonia which means his muscles and his ligaments are very weak, his joints actually come out and go back in again although this does not hurt Finley. He also has Microcephaly which means a small head and brain because his brain is not developing properly, as well as this he has severe Global Development Delay and growth problems including Scrotal Hypoplasia (testes not developing) and reflux disease.  Finley has a gastrostomy as he does not eat very well, so this enables us to tube feed him straight into his tummy and ensure he is getting enough nutrients and calories.  Finley only weighs 16 lbs 14 oz and we are hoping he will begin to steadily increase his weight, he has only had the gastrostomy in for 3 months.  Finley was in Leeds General Infirmary 3 months ago to undergo muscle and skin biopsys, a left Orchidopexy and his Gastrostomy, he was also suppose to have an MRI but this was cancelled due to unforseen circumstances and has to be resheduled.  We will have to wait for about 4 months before we get results from the biopsys but they are looking for Mitochondrial disease (a problem with the nucleus of the cells).  What we do know is that Finley is progressing very very slowly and his consultant says the longer he doesn't walk the less likely he will this is why we need to act now, what we do for him now will have a major effect on his future.  Finley is a very happy boy full of smiles and is very ticklish he has a gorgeous giggle that just makes me melt...

He has a Portage nurse every 2 weeks, Surestart play sessions every 2 weeks, physio twice a week,  speech and language therapy every month, occupational therepy every 2 weeks, he is under about 15 different Doctors/Consultants and Specialists. Finley also attends Leapfrog Nursery in Brough and the staff there have been fantastic they have raised £680 for Finley already!  We have a key worker called Jane from Kids charity who looks after all of us.  Everyone has been amazing and we are so grateful for the love and attention Finley gets from everyone involved in his care.

We also want to send Finley to swim with wild dolphins with a charity called Operation Sunshine which research has shown has great benefits for children with brain injuries and disorders.