My son O'Ryan is the happiest and sweetest 5 year old boy but sadly he can't eat, walk, sit, crawl or stand on his own.
He was born prematurely at 29 weeks following spontaneous onset of preterm labour.He was born in a good condition and began CPAP at delivery.He remained on CPAP for 5 days and was self ventilating.He was transferred to his local hospital for continuation of care on 7th November 2011, on the day of admission,he began to have frequent desaturation and bradycardia requiring incubation.His full blood count showed a haemoglobin of 6. requiring an emergency blood transfusion,(that day I will never forget as we were so close to losing him) and was transferred back to the hospital where he was born.
During his re-admission he remained intubated for 3 days and made a good recovery.He underwent extensive investigation by the Haemoglobin Team for haemolytic anaemia, as Hus serum brilrubin and LDH were elevated .Part of his hyper - brilirubinaemia was conjugated due to (kernicterus) and the lack of oxygen which led to O'Ryan developed Cerebral palsey and Bilateral asymmetric Dystonic,.
This condition affects his whole body and his needs are very complex he can't sit or stand or walk without assistance.I have to teach my son everything from crawling to sitting,to standing to walking by doing a lot of physiotherapy and hydrotherapy so he can in the future have some independence.
O'Ryan is strong little boy who just wants to join in with other kids and play but unfortunately the NHS only provides one hour sessions a week of physiotherapy.
Thankfully we found help for him at ABR Scotland www.abrscotland.com ABR is a unique, rehabilitation therapy that is primarily used to help children with cerebral palsy and brings about predictable recovery of the muscular skeletal structure and motor function.
We have to fund his therapy ourselves as we do not get any help from the NHS. Every little helps and bring O'Ryan closer to being more independent.
Thank you.