Help Lithuanian Kids in their Battle with Cancer

Kristina turned to the Mothers' Union with a cry for help. Her daughter has a very rare disease and because of that, the girl can only eat special formulas. We, in turn, gave the family 1000 euros for the family and share the letter of mother Kristina, asking that you - our community - help this family by sharing the story and helping to finance the purchase of baby formula:
"On 18.05.2020, an apparently completely healthy daughter, Adriana, was born to us. We were only worried about the cysts in the head, but the doctors assured us that they should pass with time...
As time passed and we watched our girl, we started to worry that she was not growing like other children of her age - she was weak, couldn't hold her head up, couldn't sit, roll over... She just lay on her back. The involuntary movements of the arms and legs were also very prominent.
Somewhere from 4 months we started looking for reasons and turned to doctors. Unfortunately, for a very long time, doctors could not make an accurate diagnosis and simply wrote mixed developmental disorder everywhere and suspected cerebral palsy.
From the age of five months, we started going to rehabilitation centers in Vilnius, Druskininkai, Palanga, taking them to the swimming pool and giving them massages. We were constantly doing the exercises ourselves at home.
Only at the age of 1 and 2 months Adriana began to sit up at least somewhat; 1 year and 9 months to crawl still can't speak.
in 2022 March. At the Santara clinics, Adriana was finally diagnosed with the cause of all this - a very rare genetic disease - glutaric aciduria type I (GA1). Doctors said that this is only the second confirmed case in Lithuania.
This disease is characterized by the fact that Adriana's body does not tolerate the amino acids lysine and hydrolysine, which are present in all proteins. They accumulate in the body and poison the body and damage the brain (also the cause of the cysts in her head). Adriana is weak, colds and high temperatures are very dangerous for her. It is also worrying that at any time (especially if the diet and preparations listed below are not followed) Adriana may experience a specific crisis of this disease, which may cause her to forget everything she has learned.
Unfortunately, the only world-known way to alleviate this disease, reduce the likelihood of crises and help the body develop is to follow a strict protein-free diet, daily use of a special synthetic protein (without lysine) and carnitine.
in 2022 March 14 Santaras clinics applied to the commission for reimbursement of the costs of treatment of very rare human health conditions regarding the reimbursement of the costs of purchasing the aforementioned preparations, but this m. May 11 received the answer that it is not possible to do so due to the lack of reimbursement and legal regulation of special food products for medical purposes.
Because the special synthetic protein and "L-Carnitine 1g/3.3 ml. syrup 50 ml N1" in our case are the only medical preparations that can at least somewhat help the body to develop with such a disease, we are asking you for help in reimbursing the costs of their purchase, as currently there is no procedure for reimbursing these measures in Lithuania. Unfortunately, they are quite expensive, and as the body grows, larger doses will be needed. We really hope for your help, thank you!"