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Daniel

Daniel was born in 1999 at Gloucester Royal Hospital with many medical problems, the most prominent at the time being, congenital heart disease. He was retrieved to Bristol Children's Hospital within a few hours of birth. This meant long periods of hospitalization for open heart surgery, serious post-op infections, as well as many clinical investigations. For the first 18 months, if Daniel was not in hospital, he was in out patient appointments, x-ray & MRI departments, physio & O.T appointments or developmental checks.

Daniel was diagnosed with Tetralogy Of Fallots, Left Pulmonary Artery Sling, LeftSided Hydronephrosis & Dysplastic Cystic Right Kidney, Hyperspadius, Undescended Testicle, Optic Nerve Hypoplasmia & Nystagmus, Agenesis Corpus Callosum, Severe Psychomotor Disability, Bilateral Hippocampal Malformation & Delay inMyelination, Microcephaly, Epilepsy, Severe Constipation, Asthma & Hypotonia.

Finally Daniel was confirmed to have Mowat-Wilson Syndrome in July 2004. Daniel was, and still is tube fed. Daniel suffered with severe vomiting & retching problems, which required a fundlepliquation and gastrostomy, to ease the symptoms, as Daniel was now failing to thrive and his weight had fallen off the centile chart for a long period of 22 weeks. Various feeding regimes had been tried & failed, as well as changes in milk brands & medication, as well as working with speech and language therapist.

Daniel's development was extremely slow, he could not support his own head until he was approx 2 years old & was 3 years old before he was able to sit on the floor unaided for short periods of time. Daniel started crawling (Bunny hopping!) in May 2004. He is wheelchair bound, but can walk approx 10 meters with the aid of a walking frame. Daniel has significant pronation of his feet which could make effective walking difficult.

Seizures have been a problem for Daniel since he was 6 days old, these have been known to last from 5-90 minutes, they mainly happen during his sleep leading to incontinence, temperature & vomiting. Sometimes even hospitalization due to semi-conscious. Daniel's seizures can leave him with his leftside becoming floppy & the right side showing tonic clonic movements. Although, the good news at the momentis Daniel has only had one small seizure since January 2005!.

Playtime was extremely difficult for Daniel before he had his glasses at three years old, his nystagmus was very rapid, which meant Daniel was unable to focus on toys to choose and play with.

Daniel began special needs school in September 2001, where he attends a small structured group using high staff ratios & conductive education. He also has regular access to speech & language therapy. Daniel loves school, on waking in the morning he is reminded it is a school day, on hearing this Daniel smiles from ear to ear & if sat up in bed, he bounces with excitement. Daniel is transported to school on an LEA provided minibus, as the bus pulls off he is still smiling & waves bye-bye.

Daniel mainly communicates through body gesture & facial expression. He has no speech, but makes good sounds like "mum-mum-mum" & "bob-bob-bob". He waves hello & goodbye. He can also shake & nod his head appropriately for yes & no, as well as clap himself when praised.

Daniel is a very social boy who enjoys adult attention. He loves to watch and listen to other children playing. He charms everyone he meets. Daniel is eager to please & delighted when praised or indeed spoken to, but he is more than happy to play independently. He loves music! & loves to roll around the floor with big sister Emma. He loves it when she plays rough and tumble with him. Emma treats him as her little brother and not like a disabled child, Daniel also loves swimming.

Daniel is completely dependant on adult support in all areas of his care. He wears nappies and shows no awareness of when he is wet or soiled. He is unable to dress, undress, wash, bathe or feed independently. He can become distressed by unexpected noises and sudden movements.

Daniel has had an extremely tough start in life. In our eyes he has achieved far more than any typical child of his age. He is determined, happy & loving (blows lots of kisses). Everyday with Daniel is a miracle, every achievement is a milestone. All we expect from Daniel is to do his best & never fails us! 

Daniels personality shines through on every occasion, perfect strangers in the street will stop to talk to him, just because he's given them a smile or wave, much to the overwhelming pride of his parents!

Written by Karen & Ray, Daniel's parents

 
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