All about Nate

All about the Nate  o saurus

Nate was 4 days early, he was not prem as people imagine. Nate was born by emergency c section as the fools didnt realise until i was very dilated that he was breech. ( thanks)
When he came out he needed some oxygen and had been in meconium and distressed for 10 hrs. He didnt move or make a sound. Everyone hoped he was stunned. His floppyness meant he was taken to SCBU where later they produced a list of everything that was "unusual" about him. Lots of head shaking.
Nate was in SCBU for 28 days. During this time we were told he had weeks then months to live. Consultants suggested he was unlikely to improve movement or breathing wise ( he had developed a need for oxygen). He had blood and urine tests, head and abdominal ultrasound, head MRI, X rays of chest hips and knees, full micro array chromosome analysis, and further gene testing for a particular disease. Everything was normal.

We got him home ( using oxygen via nasal cannula) and gradually weaned him from ng to bottle but he struggled to put on weight. He was quiet.
At 3 months we went into the RVI for a sleep study and came home 7 weeks  later armed with a ventilator for use at night or when unwell.


NATE CAME OF OXYGEN IN THE DAY BEFORE HE TURNED 2!!!!

Nate is non mobile, non verbal, gastrostomy fed, visually impaired, has core hypotonia, and is ventilated at night due to central and obstructive sleep apnoea and hypoventilation. Nate has seizure like episodes of hysterical laughing and crying, and presumed complex partial seizures. 

Nate has had - ambulance rides, been bagged by nurses,  resuscitated by his dad (RBD), ward stays, operations and a PICU stay. His health deteriorates quickly and we are always "kept on our toes" .

After 3.5 yrs of being our SWAN Nate finally received a diagnosis in February 2014. He has ATR-X syndrome. 

Funds raised go towards specialised equipment and therapies to maximize Nate's potential and quality of life.