Garnelenzüchter helfen – shrimp breeders united for Philip

Der Sohn von Miroslav Ilic ist sehr krank, und einige Züchter haben sich zusammengetan, um ihm zu helfen. Mittlerweile gibt es auch eine Webseite: Hilfe für Philip

Über Philips Krankheit wurde ausführlich in der Zeitung berichtet: Unheilbar krank – Philip kann nur noch lächeln

Anbei die englische Übersetzung des Artikels (mit freundlicher Genehmigung von Hans Pöschko):

Incurably sick – all Philip can do any more is smile

Those who saw the movie „Lorenzo’s oil“ that came out in 1992, based on an authentic case, know that it is about the rare disease adrenoleukodystrophy (X-ALD). This debilitating disease cannot be healed, it can only be halted, at best. Philip Ilic, from Weiler, Germany, of only nine years of age, suffers from this disease. His parents fight a desperate fight – not only with the disease, but also with bureaucracy. And they need urgent financial help.

Seven-year-old David and Jona, of four years, are running around the apartment. Less than two years ago, their brother Philip would laugh and play with them. He used to be a bright kid, and he was happiest outside, and – during the summer – at the Weiler public swimming pool. But today, Philip, who will turn nine this month, can do nothing but smile when he feels his two brothers close by, playing. Philip has turned blind, and he is almost deaf, he cannot speak any more, nor stand, nor walk. All he can do is lie on the sofa where his Dad has placed him. Nobody knows exactly how many of the things around him Philip still notices, and if he understands what people say. „He is going to die“, says Philip’s father, Miroslaw Ilic, quietly. Together with his wife Anita he keeps hoping that the disease can be stopped, albeit temporarily, and that they can have Philip around for a few more years.

Philip suffered from migraines since he was little, and in late 2012 and early 2013, he had several bad attacks, however, these did not have anything to do with ALD. However, doctors examined him to get to the reason of these attacks, and then they found the disease. First they only saw a butterfly-shaped shadow inside Philip’s head. Various doctors were unable to find a reason for this phenomenon. They thought the shadow to be a tumor or an inflammation inside the brain, says Miroslaw Ilic, but in early February the neurology department of the University Clinic Tübingen found that Philip suffers from a genetic disease that only affects male children and has a probability of 1:20,000. It causes a rapid neurological decline and the gradual loss of all vital body functions. Adrenoleukodystrophy – with the correct abbreviation X-ALD, as the defective gene is located on the X chromosome – is a genetic defect inside the brain that inhibits the long-chained fatty acids produced naturally by the body from breaking down. They accumulate inside the brain and inside the kidneys – with disastrous consequences.

Bone marrow from his brother David

The scope and the rapidity of these destructive effects Philip suffers from were unheard of before. On the contrary: The prognoses that the disease, although uncurable, could at least be stopped, were very good, according to Anita Ilic. High-dosed chemotherapy and a bone marrow transplant were said to help. They found a donator surprisingly soon: The bone marrow of Philip’s brother David was a perfect match. His father tells us that he was a bit afraid of the operation – and of not being able to really help his brother. From late May to early July 2013, the entire family stayed in Tübingen, and after the treatment they returned home, knowing that the disease can persist for up to a year after the bone marrow transplant, i.e. you can see only after a year whether the treatment has done anything for the diseased child. Unfortunately, since this April, Philip has been suffering from massive, rapid decline.

When the Ilic family was on the island of Sylt this March for family rehab, Philip was walking along the beach for five kilometers on his own two legs, even though he needed some support. Now, he is merely able to move his head and his hands, and he is fed with the help of a tube. One of Philip’s doctors told Miroslaw Ilic he had never seen such a rapid progression before. In this situation, the Ilic family – who had to keep their apartment sterile until the end of last year so Philip did not catch any germs – can use every little bit of help they can get, and need as little stress and bureaucratic hurdles as possible.

However, bureaucracy was at its worst when it came to auxiliaries like e.g. the wheelchair the health insurance company approved, but which was a model that did not support Philip’s body as required. A good thing that the family was loaned a suitable wheelchair from the childrens‘ hospice they were staying at for a week in the Allgäu region so his granny was able to give him rides through the village. „Being outside improves his quality of life considerably“, his father says. After the Pentecost holidays, Philip was unable to go back to the school for disabled children he used to attend, again due to the unsuitable wheelchair. When he was able to sit and walk himself he was brought to that school by a transport service day by day. The health insurance company also took a very long time to approve a therapeutic chair that allows Philip to sit at the table with his family. And there were some smaller cumbersomes, like e.g. the fact that the city council wanted the family to pay kindergarten fees even though the children did not attend for weeks as they stayed with their brother at the clinic in Tübingen. The mayor of the hamlet of Weiler, Klaus Beck, intervened with the city council, and the family got their fees back. „We are fighting on all fronts“, Anita Ilic says, and her husband criticises that in our health system, there is „a lot of red tape and not much willingness to deal appropriately with people going through difficult situations“. The family faces financial problems, too. They are thinking about moving house – as their current home has very steep staircases. They lack the money for a roomier car they need to transport Philip in his wheelchair – even if it were only for the way to the doctor’s office. At the moment, one of the parents drives the car, and the other sits in the back seat, holding Philip.

A camping holiday in Italy: Philip’s dearest wish

There is lots of help, too, however: not only financial help (please see further below), but also very practical support. The mobile sick children care service makes it possible for Anita Ilic to take care of her other two boys for a few hours per day, and the caregivers from the children’s and youth hospice Sternentraum in Backnang, Germany, come by twice a week for three hours. The „Aktion Herzenswünsche“ is ready to enable the family to go to Italy for a camping holiday by mid-August. This would be a dear wish come true for Philip and his two brothers. If they can go at all will be a short-notice decision, but as things are today it seems possible. And of course, there are many people in Weiler that take part in the fate of the Ilic family – like the school, the church and the mayor – and who try to help, practically and financially.

Donations and donations account

Maybe the family will be able to buy the car they need so much, a sufficiently large car that’s equipped with everything they need to transport Philip in his wheelchair. Zeitungsverlag Waiblingen has received a request for help by the Authority for Families, Schools and Sports of the city of Schorndorf and will give 2,000 Euros from its funds of the Aktion Miteinander – Füreinander. The city of Schorndorf itself will participate with a donation of 800 Euros from the city social fund. Meanwhile, two donations accounts have been opened in favour of the family.

One – initiated by mayor Klaus Beck – with the evangelical church Weiler. Please add the reference „Philip Ilic“ when sending money. The bank account is with Kreissparkasse Waiblingen, BIC: SOLADES1WBN, IBAN: DE0460250010006449.

A second donations account has been made with the children’s and youth hospice Sternentraum in Backnang, IBAN DE36602011200000009024, BIC: GENODES1VBK. Please mention the reference „Philip Ilic“ as well as the name and address of the donor in case you need a donation receipt. Another possibility is to send money via PayPal to PHILIP.ILIC@GMX.NET