Niamh's Other Special Friends

To change Your Site Name go to the 'Page Master' under the 'Design' menu

Niamh's Journey

england-county-map

Amy

Nathan

Corbin & Leyla

l.EBqkangdHHulLXHD

Nathan was born in October 2004.

A few hours after he was born he had what appeared to be an epileptic seizure. Nathan came out of hospital after 2 weeks and we waited to see how he would develop. Specialists had no idea what was causing his problems despite doing many tests on his brain, spinal fluid and blood.

Up until 3 months of age Nathan did quite well but it soon became apparent that he wasn't developing as he should have been. Now at age 4 he is unable to walk, talk, swallow, see or do anything for himself, he also still has seizures every day. We have recently started the Ketogenic diet to try to help him.

He is however a handsome, happy and content little boy who brings love and happiness to everyone around him.

We still have no diagnosis for Nathan and we do not know what his future holds but we have a little boy who smiles, is cheeky, loves to be bounced on your knee and loves attention from anyone and everyone that will give it to him !

He once lost the ability to smile, which was awful, recently he has re-gained this skill, for this we are eternally grateful and feel we have been truly blessed in having such a special son.

Amy

Amy was born on 13 August 2003 at full term weighing 8lb but with an Apgar score of 1. She was blue and only just alive. Paediatricians struggled for days and could not understand the problem until an Obstetrician looked at the trace of her heartbeat taken during labour. The midwives had not noticed for over 45 minutes that Amy was in distress and had not performed a simple episiotomy that would have prevented the massive brain damage that she consequently suffered. The NHS admitted that Amy would have been born perfectly healthy if they had done their jobs correctly.

Amy was given minutes, then hours, days and then weeks to live but she is a fighter with a strong heart and has no plans to leave us. She has severe cerebral palsy with all the associated difficulties. She suffers daily with muscle spasms, reflux, and coughing but is still able to enjoy cuddles, music, stories, horse riding and the hydrotherapy pool.

Amy can not see, swallow, walk, talk, or even move much but she is beautiful with a great personality which she can communicate in her own way. She has brought such sadness at the same time as joy and richness to our lives. She has a perfectly healthy younger brother who loves her very much even though she can not play with him.

Through a medical negligence claim Amy is well provided for but there are many other families who do not get the help, support, or equipment that they need. In order to help these families Amy has her own charitable fund which you can find at www.changedbyachild.com

corbin

Corbin was born on 14th May 2005 and started having seizures within the first 12 hours of his birth.

MRI scans revealed that Corbin’s brain had not developed correctly in the womb, and he was diagnosed with Cortical Dysplasia with Polymicrogyria abnormalities.
It was also revealed that Corbin had paralysis down his left side known as Hemiplegia which had most likely been caused by a stroke before, during or soon after birth.

Corbin has global developmental delay and regular seizures, but otherwise is a very happy little boy. He now has a range of movement down his left side and is able to walk but his speech is very limited. He attends Brooklands special school and is progressing well.

Corbin’s full story can be found by following the link under his picture.

Leyla

Leyla was born on 11 July 2007 after an uneventful pregnancy. At around 3 months of age, her visual development was the first problem to be noted, quickly followed by hypotonia and global delay.
 
Seizures were first recognized at around 1 year, and a muscle biopsy led to the diagnosis of Mitochondrial disorder (Cytochrome C Oxidase deficiency) Complex IV. Persistent feeding problems and very poor weight gain led to NG tube placement, followed by a Gastrostomy.
 
Leyla has suffered prolonged and severe pain, but recently diagnosed with Eosinophilic Colitis and possible Eosinophilic Enteritis, and treatment has recently started. Aside from steroid treatment, Leyla is on numerous medications to control reflux, seizures, dystonia/extra pyramidal movement, and a Mito Cocktail.
 
At nearly 27 months of age, Leyla cannot currently roll, sit up, reach out or talk.