Original Article: AN appeal has been launched to help an Exeter boy get a much-needed specialist car seat.
Three-year-old Felix Probets is due to receive a specialist seat worth over £2000 but the charity funding the donation urgently needs help.
Felix has a rare incurable life-threatening condition known as Atypical Haemolytic Uraemic Syndrome; which is a complex genetic disease of the immune system which affects primarily the kidneys but also can affect other organs (as in Felix’s case) including the brain.
Less than 1,000 people worldwide have the disease, which means that the immune system attacks the body’s own cells causing organs to fail or become damaged.
Felix’s independent mobility is also severely affected causing him to require additional postural support.
Felix has undergone Plasmapheresis, a process which takes out the part of his blood which doesn’t do what it should and replaces it with donor blood products, at Bristol Children’s Hospital for the past two and a half years, between 1 and 3 times a week. Each time is a four hour round trip for the family and the appointment is crucial to keep Felix alive, whose condition currently has no known cure.
The disease has also left Felix’s body in a hypotonic condition, meaning he has very poor muscle tone and appears ‘floppy’. Therefore, Felix cannot use a standard car seat as it does not give him the correct postural support, making it increasingly dangerous for him to be transported to crucial medical appointments as he grows.
The new donation will mean Felix will have a specialist seat, which will not only give him the additional support he requires to keep him safe during journeys but also help prevent additional problems with his posture and provide peace of mind for his family whilst driving.
However, Caudwell Children say more funds are desperately needed for disabled youngsters like Felix and are urgently appealing to get more help.
Trudi Beswick, chief executive of Caudwell Children, said: “The car seat, which is not available on the NHS, is crucial in helping Felix in his day-to-day life, but our funds are running low and unless we get the support of the local community donations like this will disappear.
“We are appealing for kind-hearted members of the public who may be able to fundraise or donate to Caudwell Children and help local families like Felix’s.
“Because equipment like this is not available on the NHS, Caudwell Children is a lifeline for families caring for a disabled child.
“We are anxious to get as much support as possible from the local community, no matter how big or small, so equipment like this can be made available for other children but we can’t do it alone.”