Help me fight the progressive illness and live longer

Fundraising campaign by Magdalena Piorunek
  • US$200.00
    raised of $132,000.00 goal goal
0% Funded
1 Donors

No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities

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Hi, I'm Magdalena, I'm thirty-five years old. Since birth, I have been struggling with a serious disease - Progressive Spinal Muscular Atrophy (SMA type 1 Werdnig-Hoffmann). It is a neuromuscular disease of genetic origin: the neurons responsible for muscle function in the spinal cord die, causing the muscles throughout the body to weaken and gradually atrophy. When I was a child, I could sit by myself, raise my hands, draw, write and eat. After thirty-five years the disease has progressed considerably, and at the moment the only thing I can do on my own is to control the computer mouse with one finger. Unfortunately, even this is very difficult for me. My mother helps me with all my daily activities. Without her help and care, I would have given up a long time ago.

For about two years, a drug called Spinraza, which prevents the progression of the disease and improves the functioning of weakened muscles, has been refunded in Poland. For reasons beyond my control I have not yet received any invitation to hospital test which would allow me to qualify for the drug program - even though I entered the list immediately after receiving genetic test results required for treatment (May 2019). Unfortunately, pandemic situation in Poland has effectively blocked the possibility of treatment that would save my health and life.

I am not one of those complaining about my fate and I bravely bear all inconveniences and adversities. But lately I feel like I am getting weaker, with SMA anemia (as I no longer have the strength to bite and swallow food), depression and persistent pain in my spine and legs. I am very afraid that the next function taken away by the SMA will be breathing...

For many years I have lived flats on a fourth floor with no elevator. I hardly left the house. Despite this, I finished high school, started working remotely via my computer and I work to this day. I develop my passion towards computer graphics and have helped many people understand that the world does not end when one is closed within the four walls of the room. I have proved more than once that the impossible becomes possible and after thirty-two years thanks to my stubbornness I finally managed to leave the fourth floor for good and now live in an apartment where stairs are no longer a problem. All I need is the medicine, special rehabilitation equipment and additional care. Below I show a list of things necessary for everyday functioning, improving the quality of life and health. For me these items and services are just as important as for others the opportunity to catch breath...

1. Rehabilitation bed - I currently have one that refuses to obey after fifteen years and often crashes at the least appropriate moment. I spend one third of my life in bed and therefore it must be comfortable because it directly affects my functioning throughout the day. For me a bed needs additional electrical options - bending, tilting and changing the height so that I can lie down or get up at all. It must also have a drainage function so that in the event of infection, the secretion does not flood my lungs, and that the swelling of my legs is not so problematic. The bed mattress must also be special, anti-bedsore and comfortable.

2. Rehabilitation lift - the one I have is currently on strike and I am afraid that I will eventually get sick, and without it I won’t be able to sit on the wheelchair, I won’t lie on my bed, and my mother's already weak spine will not stand it all. The new lift is just as necessary for me to live as the bed.

3. Toilet chair replaces a toilet seat that I wouldn't normally be able to sit on. It also allows me to take a shower. Due to the contact of metal parts with water the chair wears out and I need a new one every 2-3 years.

4. An electric wheelchair – this is a difficult subject as a wheelchair suited to my weak motor functions is more expensive than a new car. But I have a terrible desire to be able to leave the house alone, without any help. Feel the wind in my hair and rush ahead as long as I have enough battery power. In February this year I had the opportunity to try out such a device - while sitting in it I was impressed with my own independence! It's like learning to walk: once you get up on your feet, you don't want to stop. It would be my legs and my strength...

5. Pragma is an innovative device supporting rehabilitation in SMA, extremely helpful and necessary for people treated with Spinraza. And I really hope that they will finally heal me and then exercises on Pragma will be the main thing that lets me recover.

6. A car adapted to transport someone in a wheelchair - it may be an excessive need, but it would change a lot for the better. Also in connection with treatment: it would open the possibility of trying treatment in another hospital in Poland, somewhere where I would not have to wait in line forever. Using a regular car is very difficult, due to the pain in the spine and legs, it’s quite problematic for me to sit down for more than 30 minutes on an ordinary car seat. On top of that, I suffer a lot while driving and need long time to recover afterwards. If I didn't have to get out of my wheelchar, it would be extremely comfortable and much safer. Plus, it would be awesome if I could travel farther than five kilometers from home. Not to mention the emergency doctor visits. Due to my lack of mobility they are very difficult right now.

7. A coflator or cough assistant is a device that helps to clear the respiratory tract during an infection. People with SMA are at risk of developing upper respiratory tract infections and are unable to cough due to weak breathing muscles. And the mucus that builds up in the bronchi and lungs without a cough reflex can cause suffocation. I have just had such an infection and I realized that I would not be able to deal with another one without a coflator...

8. Medicines, dietary supplements (including CBD oil) and hygiene measures are a never-ending monthly story... There are months when I have to give up something to meet other life priorities. It consumes all my salary, which sometimes is not even enough. I work to take medicines and there is not much left. But thanks to all of this I'm still alive.

9. Rehabilitation - one hour a day every day - I would describe it as the necessary minimum that could stop progress of my disease and prevent contractures. Rehabilitation without medicine is the only rescue, and with medicine – the only way to regain lost strength. So in fact it should be a priority, but only a few can afford that. The average cost of one hour of rehabilitation a day is one hundred zlotys (around 26 USD). Currently, I use the eighty hours of rehabilitation that I am entitled to under the NFZ (Polish National Health Fund) insurance. It is enough for two and a half months of my rehabilitation needs, but what next? I can't afford private hours...

10. Two or three hours a day of care are also necessary for me. It’s very difficult for my aging mother who looks after me on her own twenty-four hours a day. When I turned to the Municipal Social Welfare Center to get a professional caregiver, it turned out that I was too "rich" to apply and that the payment for it was one hundred percent of my share. At the lowest rate of seventeen zlotys (4,30 USD) per hour, times three hours a day and times thirty days, it's almost one thousand six hundred zlotys (412 USD) a month, and unfortunately I don't have strength to work two jobs...

For these purposes I would need five hundred thousand zlotys 128.825 USD). These are very high costs, far exceeding financial capabilities of myself and my close family.

Despite health and financial difficulties, I have ambitions to establish, launch and run my own foundation supporting people with disabilities. I know it will be a while before I do this, especially now that I enrolled in college at the age of thirty-five. My dream is to be able to constantly develop and expand my knowledge on topics that interest me. If you think that my goals are good and that all I ask to be a little less dependent on others and more independent, please support me in my activities. I will turn the help I receive into good that I will give to others in need and prove more than once how much I can carry without the use of physical strength, which I do not have at the moment, but for which I am constantly fighting. Only with your help can I win.

THANKS A TON for all support, help, goodness and open hearts!

Fundraising Team

  • Magdalena Piorunek
  •  
  • Campaign Owner
  • Dominika Grzeszczak
  •  
  • Campaign Owner

Donors

  • Martin Duffy
  • Donated on Nov 02, 2020
  • I hope this helps you some.

$200.00

No updates for this campaign just yet

Donors & Comments

1 donors
  • Martin Duffy
  • Donated on Nov 02, 2020
  • I hope this helps you some.

$200.00

Followers

1 followers
Martin Duffy
US$200.00
raised of $132,000.00 goal
0% Funded
1 Donors

No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities