Kinga Rydz CA-Team (SMA-No-More)
Donation protected
Warm Welcome to All,
My baby niece, Kinga Rydz, came into the world in September of 2021. With big blue eyes taking in its every wonder, she is like any newborn: she eats, sleeps, laughs, and loves to cuddle. But, that’s where the similarities end – several times a week Kinga has to do an intensive physical therapy that often ends in tears, and a lumbar puncture every two weeks. She is only few months old and knows a lot about pain and discomfort.
My baby niece, Kinga Rydz, came into the world in September of 2021. With big blue eyes taking in its every wonder, she is like any newborn: she eats, sleeps, laughs, and loves to cuddle. But, that’s where the similarities end – several times a week Kinga has to do an intensive physical therapy that often ends in tears, and a lumbar puncture every two weeks. She is only few months old and knows a lot about pain and discomfort.
Kinga was born with SMA (Spinal Muscular Atrophy), leading genetic cause of infant death. Until recently, there was nothing that could be done to stop this devastating illness. Now, scientists have found a cure, a gene therapy that one dose of also happens to be, to date, the most expensive treatment in the world. The gene therapy will provide a copy of the gene Kinga was born without and needs so desperately. The therapy will greatly inhibit the progression of the disease, in which her muscles slowly die off, one by one. Our race against time has begun.
"From birth, Kinia has no neurological reflex on her back and we do not know how it affects her now or how it will affect her future. Physiotherapists say that they do not know anything about it. We have a visit to schedule with a neurologist that specializes in SMA, in Warsaw. Kinia is more flaccid on the left side, even has a slightly tilted head to the left. Often during her rehabilitation, the therapist says that the head is not stable, it often falls to the side. We exercise it all and often and we keep on the fight against the time. If someone did not know that Kinga has SMA, at this stage they would not see the symptoms with a naked eye - She really looks like a healthy baby. " ~Justyna Rydz, Kinga's Mom
Kinga is now receiving a different, and in the long term, far less effective treatment to slow down the disease. That means that she will have to be subjected to this painful lumbar puncture as long as she has a chance to live, OR, until we are able to collect the $2,300.000.00 for the SMA Gene Therapy.
❤ We learned that SiePomaga portal is n'o easy to use within USA, therefore, we created this GoFundMe page to help the process of saving Little Kinga's life.
❤ We adjust the amount to $2.1mln + $200k for therapy after, but we want to make sure YOU ARE AWARE this is not the only collection. We Will Transfer Funds directly to the Main Piggy Bank here: https://www.siepomaga.pl/en/kinga (Updates and Media at the end)
Any symptoms we start to see are not possible to reverse. The sooner we get the drug administrated and start a proper steroid and psychical therapy after, the better chances Kinga has to have the life we all live. The sooner she gets it, the less pain and discomfort she will have to live in on daily basis. Note that, children that reach the weight of 13 kg (28lb), or the age of 2 years, are automatically removed from the list of qualified recipients. Time is unknown to each family. No family can be sure how quickly they can expect the symptoms to show and progress.
❤ We want to Thank You for your time and support. We hope that with your kind heart this little princess will have a chance to live, to grow old and to have the quality of life she deserves. Please, check out all the links below and see what we all do daily.
Every time the treatment is administered, there is also a chance that it won’t be successful. Kinga doesn’t understand all this. All she knows is the fear associated with the hospital. Each time she cries and often has to be anesthetized. Children don’t really cry from pain; they scream. It is impossible to comfort them, no matter how hard a parent tries. The experience is wrenching for a parent–seeing and hearing your child in agony, and not being able to do anything. Each time Kinga leaves the hospital, she is in pain and needs ample time to recover, which we simply do not have.
Every time the treatment is administered, there is also a chance that it won’t be successful. Kinga doesn’t understand all this. All she knows is the fear associated with the hospital. Each time she cries and often has to be anesthetized. Children don’t really cry from pain; they scream. It is impossible to comfort them, no matter how hard a parent tries. The experience is wrenching for a parent–seeing and hearing your child in agony, and not being able to do anything. Each time Kinga leaves the hospital, she is in pain and needs ample time to recover, which we simply do not have.
♡ https://www.siepomaga.pl/kinga
♡ Kinga Rydz CA Team In Action:https://www.facebook.com/groups/1112423336186725
♡ Kinga Rydz CA Team In Action:https://www.facebook.com/groups/1112423336186725
PRESS RELEASE & TV Coverage - ALL thanks to our dear friend, Melissa McRobbie-Toll, owner of the Candela Dance Studio.
San Jose Mercury News - San Jose woman fights to raise $2.3 million for life-saving treatment to save niece with gene disorder
KDVR Press Release - Grants Pass dance studio launches fundraiser for child's $2.1 million medical treatment
Fundraising team (2)
Agnieszka Klosinska
Organizer
San Jose, CA
Agnieszka K
Team member
