PRESS RELEASE: SPECIAL ANNOUNCEMENT! HELP SAVE ANNABEL’S LIFE! No child should die because the medication to save them is too expensive

Tartu University Hospital Children’s Foundation is calling for the aid of good people to help support gene therapy for baby Annabel. Donations can be transferred to the bank accounts of the Foundation or through donation environments using the word ANNABEL as explanation. Additional 400 000 Euros from the reserves of the Children’s Foundation will be directed towards the treatment of Annabel. Making it the largest monetary support in the history of the fund so far.

3-month-old Annabel was diagnosed with a rare genetic disorder called spinal muscular atrophy or SMA1.  The incidence of this disease is around 1 in 11 000. SMA1 causes the muscle development to stop and diagnosed children mostly die before the age of two.  Oftentimes however babies suffering from this illness stop breathing even before that.

Luck has been on Annabel’s side and we believe it will stay that way. Not only due to her minor symptoms but also because of the approval of U.S. Food and Drug Administration for the gene therapy drug Zolgensma that based on scientific research can be the cure for SMA1. Zolgensma is not available in Europe yet. In the States however, this medicine costs 2.125 million dollars making it the most expensive drug in the World. Annabel’s parents have started negotiations for treatment options in the States with different U.S. medicine centres. Additionally, an application has been sent in for a chance to participate in a recently opened drug trial in Tokyo. Unfortunately, when it comes to SMA1 the time always works against the sufferer and it is vital to get treatment soon. Thus, to save Annabel’s life the financial amount needed must be collected quickly.

Annabel’s physicians Dr Haide Põder, senior doctor at the Tallinn Children’s Hospital, and medical geneticist Dr Riina Žordania, the manager of Tartu University Hospital Department of Clinical Genetics division in Tallinn, are supporting treatment for Annabel if it is possible and not inhibited by the high costs of the drug. “This is a novel science-based gene therapy that at the moment is the most expensive drug in the world. However, it is a single hour-long intravenous infusion that based on the information we have should be effective through life,” added Dr Žordania.

Paediatric geneticist Dr Kai Muru and the Head of Tartu University Hospital Department of Clinical Genetics professor Katrin Õunap have helped the Children’s Foundation tremendously by collecting scientific information and aiding in giving correct explanations to the public. Thank You for your help!

“We want to thank Tartu University Hospital Children’s Foundation and all the kind donators from the bottom of our hearts. We sincerely believe that together we can save the life of our baby daughter,” responded Annabel’s father Ahti Silk on hearing about the fund’s decision to support the treatment.

You can help Annabel’s lifesaving therapy by transferring your donation to one of the accounts of Tartu University Hospital Children’s Foundation (saaja nimi: SA Tartu Ülikooli Kliinikumi Lastefond) using the word “Annabel” as an explanation:

Swedbank IBAN EE682200221015828742

SEB IBAN EE261010220014910011

Luminor IBAN EE791700017000285384

LHV IBAN EE527700771000610813

Coop IBAN EE824204278603586607

The Tartu University Hospital Children’s Foundation is one of the oldest and largest nationwide charitable organisations in Estonia, which from the year 2000 has, along with the donators, supported different hospitals in purchasing equipment, also children in need of special treatment and care and their families by a total of 4.5 million euros. You can also help children in need of treatment by becoming a permanent donator of the Children’s Foundation at http://lastefond.ee/vormista-pusiannetus. To apply for a donation or to let us know about someone in need please send us an e-mail to info@lastefond.ee.