The past 12 months have been difficult for the Rhizo families. We have made some great new friends around the world but have also lost 4 children. 

We have new friends whose children range in ages from our newest member who is only a couple of months old to a family in the USA who have 3 children in their late teens and early twenties.

It is great that we can give tips and advice to those starting out and gives us such encourangement that children with RCDP can reach these ages when the origional prognosis seemed so bleak.

We are hoping to do more fundraising soon to be able to fun more projects. We supplied all the kids with temperature control sheets last year to help with their overheating problems and hope to be able to fund more sheets for the new families too.

We have provided some support to families around the world in order to get equipment that would not normally be possible due to financial constraints and insurance cover.

We had a mini conference here in the UK in May where we took Callie to Twycross Zoo and met up with Elvi and her family from London. As far as we are aware there have only been 6 children in the UK diagnosed with RCDP. To our best knowledge there is only Callie and Elvi still living. Callie and Elvi are very different but it was good to be able to meet others who know what having a child with RCDP is like.

Of the others we are only in contact with 2 of the families. We would love to be able to meet up and talk about all of the children. We never got to know Cameron Stirzaker from Lancashire he died shortly before we found out that Callie had RCDP but we still talk to his wonderful parents who are very supportive and willing to talk. Unfortunately we lost Charlotte (Lou-Lou) West almost 2 years ago, she was the oldest so far in the UK at 14 when she diedwe still talk to her former carer Claire Chapman and are also in contact with Charlottes sister Chantelle who has done her own fundraising for Rhizokids and the hospice where Charlotte would occasionally stay. We are grateful for all her efforts.

Of the other 2 we unfortunately have had little contact, we would love to hear from them but undertand that it may be too difficult.

We are still in contact with many of the other families who have had children with RCDP and would love to be able to meet them too as well as looking for new families to offer support to.  The genetic ratio for this condition is 1 in 100,000 live births. Given that there are around 58 million peopleliving in Britain today that should mean over 500 children born with RCDP but given the poor life expectancy and difficulty in diagnosing the condition many may have been lost never knowing what was wrong.