After 3 days of Labour & a slightly traumatic birth, Nathan arrived. I knew instantly that my worst fear had come true. Although Nathan was breathing, the midwife seemed concerned. He was taken to special care as he seemed a bit 'jerky'. After being told he was just a bit irritable from the birth & probably had a bit of a headache, we calmed down.
Two hours later we were told that he'd had a seizure & they had put him on Phenbarbitone (an anti-convulsant) & that he would be transferred to Barnet Hospital for further tests including MRI & Ultra sound scans on his brain, lumbar punctures on his spine & hundreds of blood tests. The results were all NORMAL. Doctors, friends & family all seemed sure he would be 'fine', I always knew he wouldn't, call it a mothers instinct, who knows, but I knew we were in for a bumpy ride.
Initially, Nathan was very much like any other baby, he smiled, kicked his legs & made all the right sounds, although his movements were quite jerky, he was still having seizures & cried alot. Over the next 12 months it became clear to everyone that Nathan was not developing normally. At just over a year old he had no voluntary movement, he could not use his hands, sit, hold his own head up or swallow properly. He was still having upto 25 seizures everyday & was registered blind. His spine was curving due to him not being able to use the muscles to support it, he was always vomiting & lost the ability to smile & was quite unresponsive.
The first 2 years of his life were spent in & out of hospitals, having appointments with all kinds of professionals i.e. physio's, speech & language therapists, occupational therapists, paediatricians, neurologists, dieticians, geneticists, pre-school teachers. It was hectic & stressful. Things have calmed down abit now as we have decided to send him to a special needs school called Oakleigh. it was one of the best choices we had made for Nathan, he loves it, the people there are fantastic & most of his therapy is done there.
In March 2006 Nathan had another MRI on his brain & this showed that there were some changes. The result indicated that he had a neuro de-generative, neuro metabolic disease, but they still could not give us a diagnosis or life expectancy, although we were told that he would not live into adulthood.
To say we were devastated would be a huge understatement but we had to pick ourselves up & carry on for Nathan's sake. After all' if nathan doesn't moan or complain then how can we? By this stage, we were getting stronger, crying & feeling sorry for ourselves was not going to help Nathan.
Nathan is now 4 years old, we are still none the wiser to what his actual condition is, but we have now been told that children with neuro-metabolic conditions can deteriorate very quickly & without much warning. We have to make the most of everyday we have with our beautiful son.
Unfortunetly Nathan can still not move independently, he can not sit, stand, walk, hold his head up or do anything for himself. He can move his head from side to side & he had learnt to smile again which is a HUGE blessing. Developmentally he is like a 3 month old baby & now has to be fed directly into a tube in his stomach (gastrostomy). He continues to have seizures daily & has failed to respond to any medications to control this. His spine is still curved but has got slightly better & his vision varies depending on how many seizures he has had. In the winter if he gets a cold, this can go to his chest, he had pneumonia early this year , it was very scary & could have killed him but the little fighter in him kicked in again & he was fine although we now have a suction machine to clear his chest now whenever he gets a cold.
Despite Nathan's problems he is a really happy & content little boy. He rarely cries, loves going to school, being around other children, being cuddled, playing horsey, listening to music & LOVES going shopping (so mummy has to take him regularly!!), he is aware of his surroundings and knows his mum & dad.
Nathan has to have specialist equipment to allow him to sit, stand, be bathed & to enable him to play. We have set up the Nathan Bovell Fund to raise money to allow us to get him the stuff he needs, when he needs it.
We are blessed to have a supportive family, friends & professionals around us & these people have got us through the bad times & have been there to enjoy the good.
Thank you for taking the time to read about our special son x
Written by Anna ( Nathan's mum)