The aim of this fundraising is to support a family where a little boy has got multiple diseases but wants to live. It would be possible to help him if he could gain weight and a talented medical group could start working on bringing his medical state up. He is a witty little man with the will to live and who never gives up.
There is a big boy, Richard, who is almost 14. His life started with difficulties when at the age of 1.5 he suffered from liver abscess and underwent a surgery, but after 3 months’ time another abscess developed on his lungs and he needed a ventilator for 6 weeks after that. In 2006 he underwent a bone marrow transplant operation where the donor was his mum. The complication of this transplant is chronic GvHD (Graft versus Host Disease) – the donor bone marrow attacked his organs. Pulmonary fibrosis occurred as a result of the disease which required constant oxygen transfer for 3 years.
On 2nd November 2009 in Vienna, Austria he underwent another operation: a lung transplant with living donor who was also his mum. Ever since then the family has been taking Richard to three different medical institutions for control: in Budapest, Miskolc (Hungary) and also in Vienna.
Due to the endless medical treatments Richard suffers from nutrient absorption problems and therefore it’s not possible for him to physically develop and gain weight.
His two port-a-caths, which were aimed to provide support in his nutrition are not effective anymore and therefore they need to be removed. His stoma bag needs to go as well. Due to his poor physical and health condition, professionals in Hungary don’t recommend anaesthetics, they don’t want to take the risk. When abroad the family are hoping to find a solution as he needs special nutrition which is not available in Hungary. They are also hoping that there will be a Dietitian professional who would take care of Richard, since there are more institutes abroad with their special facilities for rare diseases like his.
In his legs and arms Richard is having muscular dystrophy which is dangerously developed. The fat tissue almost disappeared entirely, that’s why he is having severe pain and stiffness. The disease causes dry mucous membranes so his eyes and esophagus feel dry. Doctors advised to plant a special cannula in for photopheresis which seems to be the only treatment that can help to stop this demolition.
Indeed the oxygen and ventilator are still essential at night.
Regardless of the endless misery Richard and his family are going through, Richard is a lively, lovely little boy, who has the willingness to live. Although he is mentally healthy, he is visiting a psychotherapist on a weekly basis as he needs support to cope with his ongoing medical conditions.
I initiated fundraising here because the family can't get support through charities and the reason for that is that his GvHD and its complications are not a result of cancer. As it is confirmed now, he is the only person on Earth with this chain of illness. It is financially and emotionally very demanding for the family and they need help to cover all the essentials for their son.
I would also be grateful if someone could get in touch with me if they know of a medical group who wouldn't be afraid to take on this challenge to find a solution that helps for Richard to gain weight. There is a Hungarian and an English version of a Facebook page where you can follow Richard's life. His mum is posting pictures from time to time with an update of his state. About a year ago Richard lost the ability to walk, but he refuses to use a wheelchair. He is a normal teenage boy, who still has got some dignity and a healthy humor despite all the hardship he is going through.
If anyone could help with information regarding special medical groups who might be able to help, please send a message through the English Facebook page.