Written by Kelsey's mum.

Kelsey at 5 months

Kelsey was born on the 27 of August 1998 by emergency caesarean. She was in severe distress and had the umbilical cord wrapped around her neck, she had also swallowed some meconium (first bowel movement).
She needed to be resuscitated and she was taken to intensive care in the special baby unit, she was probably the largest baby there at 6 pound 1 ounce.

She was kept ‘in air’ and fed through a tube for 2 weeks, the doctors couldn’t explain her difficulties and she had 2 brain scans which showed nothing unusual.

12 months old

When Kelsey was a week old a paediatrician told me he thought she had probably suffered some degree of brain damage due to lack of oxygen at birth. Kelsey did improve slightly and was able to breath without aid although we still had to feed her with squeezy bottles as she still couldn’t suck.

2 Years old, with her mum

After almost 6 weeks Kelsey was allowed home and the only explanation we were given by the doctor was that he had ‘a gut feeling that something was wrong’.

We were visited by a health visitor every day for the next 4 weeks as Kelsey was not gaining weight and was still very floppy and quiet. She began to put weight on very slowly and we had to see a physiotherapist weekly and also a specialist paediatrician every 3 months.
When Kelsey was 2 she began to gain weight rapidly and by the time she was 3 she was very overweight for her age although she was having a normal diet. After a visit to her specialist he suggested a blood test for a rare condition so we went ahead and she had the test.

3 Years old, with her dad

A few weeks later the results were back and myself and Kelseys grandmother went to see a doctor at our local clinic, he told us Kelsey had Prader-willi Syndrome and to look on the internet to find out more.

After taking his advice we were devastated to find out exactly what this syndrome entailed and what this meant for Kelseys health and for her future. After finding out all about PWS and seeing a dietician we managed to get Kelseys weight under control which in turn improved her health.

Kelsey has been in mainstream school from the age of 4, she still sees the physiotherapist once a week and she has speech therapy every day, which has worked miracles and she is now able to communicate with her peers. Although she has made lots of progress in mainstream school Kelsey is due to start a special school in September as the teachers feel this would be best for her.

5 Years old

Kelsey is now 7 and is a happy, funny and very sociable little girl, she has a smile for everyone she meets and she seems to know more people than I do !! Although the future for Kelsey is uncertain I believe with the support of family and friends, we can help her lead a fairly normal life and achieve her goals, and hopefully make pws just something she happens to have and not let it control her life.

Kelseys 7th Birthday