Donate little Annabel a life

Little Annabel has been diagnosed with Spinal Muscle Atrophy (SMA) in Tallinn Children’s Hospital – a disease that children do not live for over 1-2 years due to lack of treatment. The option of treatment is currently only available in the US.

Story of Annabel

Life is priceless – together we can save Annabel!

The treatment option for SMA is currently only available in the US, where Novartis developed a medicine named Zolgensma. The cost of treatment successfully tested by the US Medicines Agency is 2.1 million USD. We will do our best to make Annabel the first infant in Estonia to fight this serious muscle disease. Treatment is needed as soon as possible!

Happiness

In July 2018 we learned we were going to have a baby in our family. A joyful time filled with waiting, screenings, tests, visits to the midwife, pregnancy being under good control. „It’s a GIRL!“ – Mummy and Daddy happier than ever before. During the pregnancy we gave our belly baby a cute nickname Tidi, knowing we will call her Annabel.

The baby was born exactly on the expected date – March 4, 2019. The delivery went well, and soon the lovely little Annabel was in our arms. She scored 9/9 at the maternity hospital, which was great. We shed happy tears, seeing Annabel for the first time. The prettiest baby girl in the world! During the first 2 months everything was running smoothly. Annabel was eating, smiling, sleeping and growing.

Happiness turns its back on us

A tiny worry that started to develop was that Annabel didn’t want to raise her head up on her own. On May 6, we took Annabel to a routine check to the GP but were sent to the emergency department of Tallinn Children’s Hospital, as the baby seemed restless. There, Dr Põder found that Annabel’s muscles were too weak. Our tiny baby was subjected to various studies, resulting in a diagnosis of Spinal Muscle Atrophy (SMA).

It was a terrible shock to us. The world collapsed.

Heavenly powers

Magic happened and it seemed the heavenly powers wanted to give us hope. On May 24 this year, news spread of the first approved gene therapy, which cures the disease Annabel has, promising full recovery. Previously, it was impossible to cure a defective gene caused by SMA.

For us, this is an ultrathin light beam at the end of the black tunnel. The only fault is that the drug is madly expensive – 2.1 million USD.

Life is priceless – together we can save Annabel!

We will do our best to make Annabel the first infant in Estonia to fight this serious muscle disease. Treatment is currently available in the US only, as only the Drug Administration there has been authorized to market the medicine. The treatment needs to start urgently for Annabel, time works in many ways to her disadvantage. Please help!

Disease SMA (Spinal Muscular Atrophy)

SMA is an inherited neuromuscular disease that causes a child’s progressive loss of muscle function from a certain young age. While right after birth a child doesn’t suffer from any symptoms, one day, as a result of this disease, muscles of their arms, legs, neck etc., stop developing. The child cannot hold his head up, his arms and legs weaken, and at a later stage SMA will affect their breathing and eating, up to the point when they die or rely on permanent breathing support by the age of 2. In Estonia, children with such diagnosis won’t live longer than 1-2 years (because there is no treatment).

A successfully tested medicine with the approval of the US Medicines Agency

Medicine Zolgensma

Zolgensma, developed by a pharmaceutical company called Novartis and approved for SMA patients under 2 by the US Drug Administration, is the only one-dose gene treatment option that has been highly effective in clinical testing. The children treated in the test group are older than 3 now. There’s no need for another administration of the drug. This drug repairs a defected gene, i.e. replaces it with the genetically modified functional gene No. 1 in the gene chain. Then, the human body cell begins to create a right protein for survival of motor neuron. The neighbouring No. 2 gene also produces the same protein, but in smaller amounts, which is insufficient for the development of muscles motor skills (that’s why, first, a small child seems to develop muscles, but, in fact, the amount of protein decreases over time).

The sooner treatment is started, the bigger is the probability of complete recovery. Zolgensma is currently the most expensive medicine in the world at 2.1 million USD: https://www.theguardian.com/science/2019/may/25/21m-novartis-gene-therapy-to-become-worlds-most-expensive-drug

Support Annabel's treatment

Donations

The cost of medicine successfully tested by the US Medicines Agency is 2.1 million USD.

Bank account
Annabel Silk
IBAN: EE752200221071733402
SWIFT/BIC: HABAEE2X
Swedbank AS, Liivalaia 8, 15040, Tallinn, Estonia

Contacts

Kaidi Türk
Annabel’s Mother
kaidi@helpannabel.eu

Ahti Silk
Annabel’s Father
ahti@helpannabel.eu

Triin Hommuk
Help Annabel Project Manager
triin@helpannabel.eu

Sander Sisask
Help Annabel IT
sander@helpannabel.eu

Siiri Ottender-Paasma
Strategy Manager
Tartu University Hospital Children’s Foundation
siiri.ottender@lastefond.ee
+372 507 4919

Kertu Irves
Help Annabel Head of Communication
kertu@helpannabel.eu

Maria Tyutina
Help Annabel Video
maria@helpannabel.eu