An Eastbourne mother fears her ‘miracle son’ could lose his vision if he doesn’t have laser treatment which the NHS says it will no longer pay for.
Philip Ohnesorge was born with Sturge-Weber syndrome which is a rare congenital neurological and skin disorder, symptoms of which include a port wine stain which is caused by the abnormal development of blood vessels in the brain and skin.
Philip, who was diagnosed with the condition at five weeks old, suffered a series of fits as a child and had half his brain removed aged eight. After the operation he went on to learn to talk, which he had never done before.
His mother Eva Ohnesorge, who has been fighting for years to get the best treatment for her first born child, is now facing a fresh challenge after the NHS said it would no longer pay for laser treatment he needs. The treatment is done it two stages, firstly to help remove the nodules and then to treat the birthmark as a whole.
The 65-year-old, who has paid thousands for private treatment for her son over the years, is concerned that without it the birthmark will grow bigger and into the bone, deforming his face and affecting his eyesight.
She said, “I don’t know where to look to get help. I don’t want to pay for this anymore, I have paid so much money.
“If I didn’t do what I have been doing he would have cost social services and the government so much money.”
Mrs Ohnesorge, who suffered financially because of the strain of paying for medical treatments, said of her son who volunteers in a charity shop, “He is so well liked, he will do anything for anybody and is totally amazing.”
She said she was told by the Primary Care Trust (now replaced by the Clinical Commissioning Groups) that the work on the birthmark was cosmetic, but insists it is not and that the treatment only needs to be carried out every two to three years.
The nodules have now been removed - paid for privately - so the area that needs work on is the birthmark which costs £350 per treatment.
Over the years the mum-of-two has paid for some of the work, while it has also been funded by the NHS.
She added, “I feel really frustrated. I have spent so much private money.
“I could understand if it was a normal birthmark.
“If there is any sort of GP locally that would be prepared to take my son on and will allow this laser treatment I would like them to get in touch.”
A spokesperson for Eastbourne, Hailsham and Seaford CCG said, “As a clinical commissioning group we have a responsibility to make the best use of our limited resources when considering what healthcare we commission for local patients.
“Alongside the wide range of health services we do commission, we also consider requests for individual treatment through our individual funding panel.
“Funding requests in this way need to be made on a patient’s behalf by a GP, consultant or healthcare professional.
“The panel, which includes clinical and lay person members, make its decision based on a number of factors, such as using evidence of clinical need and the effectiveness of treatment requested.
“The panel also considers clinical exceptionality, effectively a reason why one patient needs to be treated over and above other patients with similar conditions for whom treatment is also not available.
“If new evidence such as a change in a patient’s condition or circumstances emerge after the panel has made its decision, patients are welcome to reapply and submit a new request to be considered.”