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 continues to grow very slowly and now at 16 months is the size of a 9 month old and although she cannot yet sit up on her own she is getting better gradually and with the help of our family and equipment supplied by our health services we hope to get her sitting on her own. We no longer use Lactulose but thanks to our American friends Callie is now on Movical and is not as constipated anymore.

 

Callie started having seizures a few weeks ago but the medication she is on seems to have calmed them down a lot.

 

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.