Tuesday, February 15, 2011

Help for 7-month old Mikołaj, SMA sufferer

Mikołaj, our seven-month-old son suffers from type 1 SMA, Spinal Muscular Atrophy, also known as Werdnig-Hoffman disease.

(Learn more about Mikołaj’s condition here)

After hearing the diagnosis, we were left alone by the doctor, who directed us to a hospice explaining how things would only get worse for our son. At this time, there is no cure for SMA but there is treatment.
At just 7 months old, Mikołaj has already gone through a percutaneous endoscopic gastrostomy (PEG) placement (feeding tube) through which he is now fed, and tracheotomy because his breathing requires the constant support of a respirator.
Right now Mikołaj is staying in the Intensive Care Unit of the Upper Silesian Child Health Centre in Katowice. However, he has qualified to be ventilated at home, with his family.
Unfortunately, the price of Mikołaj’s return home is steep. To meet our infant son’s needs, we must buy our own life-support equipment, including a respirator and a power wheelchair so Mikołaj can enjoy some small freedom of movement.
It is also essential that Mikołaj receive rehabilitation, his only hope of slowing the progression of this terrible disease and prolonging his life. Polish National Health Service does not refund rehabilitation of children suffering from SMA.
If you are reading this, we are asking for your help. Not for ourselves, but for Mikołaj. We do appreciate prayers and messages of support. But we also need financial assistance to purchase the life-supporting equipment and rehab our son needs, and deserves. We would also gratefully accept donations of any of devices listed below. Any help will make the life of our brave boy easier and longer.

Essential devices:
1. Respirator – fully reimbursed by National Health Service. Additional battery has to be purchased.
1. Power Wheelchair - about PLN18 000, NHS gives only PLN 1 800
2. Capnograph – about PLN40 000
3. Mechanical insufflator-exsufflator – about PLN 22 000
4. Oxygen concentrator – about PLN 2 600
5. Power generator, static converter (in case of electricity problems) - about PLN 2 600
6. Special wheelchair -
7. Rehabilitation sack - about PLN350
8. Ambu about PLN200
9. Rehabilitation bed - about PLN900
10. Anti -bedsore mattress - about PLN 1000
11. Rehabilitation five times a week – about PLN 2000 monthly

Mikołaj has been registered in the Foundation. Once we receive his account number, all donations can be made through the foundation and will be tax deductible. Until then, this is the account number opened only for Mikołaj’s needs:

Fundacja Dzieciom "Zdążyć z Pomocą"
PKOP PL PW 41 1240 1037 1111 0010 1321 9362
transfer title: 13401 Kamiński Mikołaj - darowizna na pomoc i ochronę zdrowia (donation for help and heath protection)
We will show detailed settlements/invoices to any individual or company willing to help, including placing corporate names on the devices bought thanks to your contribution.
Equally vital: We need a recommendation for a pediatrician with broad knowledge on SMA, who would agree to be Mikołaj’s attending physician (we live in Będzin), with physiotherapists of cranio-sacral therapy and Speech-Language Pathologists.
At your request we will send you:
1. A medical certificate on disability
2. A diagnosis made by the Genetics Department
Please contact us with questions or physician recommendations. We will be extremely grateful for any help given to our Son, Mikołaj.
Phone: 0048667012664
email: nea.ania@interia.pl

Mum Ania, Dad Marcin & Mikołaj

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