Please donate for Milana's treatment
Donation protected
Hi,
My name is Greta and I am a mother of a gorgeous little girl Milana, which is only one year old. On November 26, 2021, our daughter Milana was diagnosed with a very rare, severe genetic disease - type I spinal muscular atrophy. This disease is caused by the death of cells in Milana's body that control muscle movements, activity, functioning, and development. Milana must be given Nusinersen injections every four months (under anesthesia). But the truth is that it does not cure its diseases, but only partially stops the progression of atrophy. There is one treatment that could further halt the progression of type I spinal muscular atrophy, but it is very expensive—a single injection costs 2 million €. Unfortunately, this injection is not reimbursed in our country, so the only solution is to collect the necessary amount yourself.
Milana is very weak, she often "catches" various infections, bacteria, and viruses. For these reasons, paid rehabilitations are carried out exclusively at our home. We go to the place for procedures only if they cannot be given to Milana at home due to their specifics. Milana's physical muscle strength is very weak, at the age of one year she cannot hold her head up, does not sit, and has little control over her legs.
Due to the fact that Milana is hardly gaining weight, our daughter recently underwent a gastrostomy operation, during which a tube was inserted into her stomach through a hole in her stomach, through which she will be able to receive additional food, liquids, medicines, thanks to which she should gain weight and become stronger.
On November 28, 2022, Milana underwent an operation to replace the gastrostomy installed on August 31, 2022, and to correct the fundoplication, because our daughter developed complications and needed to replace it.
In order for our daughter to recover, it is necessary to continue her continuous, intensive rehabilitation, the help of specialists at home and abroad, the purchase of additional orthopedic devices, etc.
Only the intensity, consistency of help, professional help, and rehabilitation will help her survive and in the future be able to perform at least the most necessary functions of life.
Thank you so much for reading this far. As her parents, we hope that you will be able to share this fundraising page, as well Milana’s story and if possible, make a donation. As a family, we cannot raise this money on our own but any donation will allow us to be one step closer.
At the moment, the amount donated is: (in Lithuania)
1 219 963 €
So, 782,072 € remained to be collected.
We really want to collect the total amount by April to order the medicine and give it to Milana. Time is our worst enemy because the sooner she gets the injection, the more effective it will be.
You can see Milana’s disease story by clicking on the link, where new posts are posted every week: (all the information is in Lithuanian)
Fundraising team (2)
Jelena Kazakevica
Organizer
Scotland
Greta Patenkienė
Team member