Callum was born at 36 weeks by emergency caesarean and it was apparent at birth he was very poorly. Callum was ventilated as was critical after a few days he was able to come of the ventilator. He was extremely floppy could not suck or cry and just slept. At 6 weeks he was diagnosed with Prader Willi syndrome. Pws is very rare 1 in 20,000 births. It is a life threatening and life limiting syndrome. Life for Callum has been very challenging living with PWS. He went to a special school and is now at a specialist College.
Up until last year Callum’s health had been very good. At the beginning of 2017 Callum was diagnosed with kyphosis/scoliosis 90 degree curve it is very high up at the top of his spine and is too high risk for surgery. So at this point we don’t know what if anything can be done to help him. In February Callum developed a headache. This headache would not go and after 2 months he had a MRI which showed a cyst on his brain, after being referred to a specialist Hospital we were told it was not causing the headaches. It was a very worrying time. Then after 4 months the headache went. So at this point we didn’t really have any idea why he had the headache. Then in August Callum had a sleep study he has them yearly because he is on growth hormone. Two weeks after the study was done we got a phone call to say that he needed to go back in that day for a sleep study with oxygen as Callum’s sats were dropping dangerously low while asleep. We came home the following day with oxygen for Callum to use at home. Also with a appointment to see a sleep specialist. It was so difficult with the oxygen Callum hated it and fought it every step of the way. At the appointment with the sleep specialist we were told Callum,s lungs were only working 60 percent and he would need a non invasive ventilation machine at night to support his breathing. He was also suffering with central sleep apnea pauses in his breathing. And would need a heart scan to make sure no damage had been done to his heart while he was hypoxic when asleep. Getting Callum to wear and accept the mask at night has been so difficult. One night he cried so much and said mum I would rather have a stroke and die. It was heartbreaking I felt like I was putting my son in a torture chamber. But we got there in the end, he doesn’t like it but will wear it. He has to have another sleep study in May. Just before xmas he had his heart scan and fortunately no damage had been done to his heart. But they found another Problem with his heart not related to the breathing or PWS , we are waiting to be seen by The Evalina Hospital . So all this on top of Prader Willi syndrome has been very difficult. But all in all Callum has taken it in his stride and just gets on with life. He is such a happy kind loving boy.
This could not come at a better time I told him tonight and he is very excited. Callum had a very nasty fall last week and spent two days at the hospital had 4 x rays on his foot/ankle, one x ray had to be done with his leg in plaster as there was a big gap in between two bones and they did not know if they would have to operate. Fortunately no surgery was needed but there is a lot of soft tissue damage and Callum now has to wear a boot to support his foot/ankle for the next four weeks.