Our Support Network.
Demelza Community Home Care Nursing Team
We were introduced to Demelza by Dr Elaine Hughes. After Rudys diagnosis we talked everything over at length and with her expert advice and guideance we were able to make the right decisions for Rudy and for us as a family. One of the main decisions being that we want to care for Rudy ourselves at home and not be having to go into hospital. Demelza community care team means we have been able to do just that. They have supplied us with oxygen and a suction machine for when Rudy has a cold or chest infection. It is a huge peace of mind to us to know they are at the end of the phone 24/7.
Our GP, Consultants, Health Visitor, Dietician, Physio, Occupational Therapist and Sensory needs are all at the end of the telephone and we contact them on a as needs basis.
I take Rudy once a month to a Cranial Osteopath. I have found this so beneficial for both Rudy and myself, as she has given me lots of information and adviced me on extra things I can do for Rudy.
I also take Rudy to a nearby sensory room, (only small problem being you have to book in advance and seeing as Rudy has no sleep pattern we just have to hope hes awake and alert and ready to play when we get there!).
We decided to set up this website in the hope that by sharing our story, we may be able to help other families, who like us, have a child diagnosed with Pontocerebellar Hypoplasia. As it is such a rare condition there is little information, but I have found a few other families around the world who have set up blogs or websites which I have found a tremendous support. Its been nice for us to see other families, who we can totally relate to, but also to gain any new information or ideas that could benefit Rudy.