Our daughter Callie was born 26th September 2007 after a normal pregnancy. She is our first and only child. There had been no concerns of a genetic problems and nothing had been noticed despite several scans.

 

Callie had a difficult birth and had to be born using venteuse delivery as she got stuck and became distressed. Nothing was picked up on to begin with but she did show signs of hip contractures but as her mother was born with a clicking hip this was thought to be the case. It was only when we were due to leave and asked to be shown how to bath her that the midwife noticed her arms were short and her legs had shown no signs of improvement. We were then referred through the hospital pediatrician to see a joint specialist but nothing else was suspected at the time. Callie failed the hospital hearing tests so we were referred for further testing. A couple of weeks after Callie was born we noticed that her eyes didn't look right so we took her to the doctor for a check up and he immediately referred us and we found she had cataracts in both eyes. These were removed and her hearing was improving and things started to look up, we had been referred to a genetic specialist to determine the condition but they neede blood and skins samples for testing. Then just after christmas 2007 we took the decison to fit her with a gastrostomy tube to feed her and it was a godsend. Callie put weight on really well and things picked up. She had been experiencing terrible constipation and acid reflux but medication seemed to be controlling it.

As Callie grew a bit more she got terrible pains in the evenings which we eventually put down to the combination of an agressive laxitive (Lactulose) and a strong anti acid medicine (Omeprazole) we had to carry on with the laxitive for a while but changed the Omeprazole for Ranitadine and things improved. Callie remained small but with physio work she was gaining more movement every day.

Then in June 2008 the bottom fell out of our world, Callie was diagnosed with RCDP, after looking into the conditon we were devastated. We left a message on the Rhizokids.com website and suddenly gained lots of new friends who knew exactly what we were going through. They have provided such support and a wealth of information that we now see that there are at least others out there who we can talk to and there is research into the condition that we can support by raising funds for.

Callie started having seizures when she was about 14 months old it has taken a long time and 3 different medications but she is now happy.

 

Callie is still progressing well she makes lots of sounds and can say a couple of understanable words, she still cannot sit up and her knees are now locked in a bent position but she is happy most of the time and loves to play or listen to music and we are grateful for the time we get with her.

 

We know that things will never be normal and that our beautiful girl will be severly disabled and that she has a short life expectancy but  she is ours and we will fight and do everything we can for her and for the other kids in the UK and around the world who are like her. This is why we have set up Rhizokids UK, to complement the charity set up by our American friends and to raise awareness in the UK.