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Donations for Panagiotis-Rafail suffering from rare muscular disorder

An unprecedented expression of support to help 18-month old Panagiotis-Rafail suffering from a rare neuromuscular disorder. In just three weeks, Greeks donated so far approximately 2.3 million euros to help the toddler to receive a life-saving drug. The mobilization started after the Greek Supreme Health Council rejected the parents’ request for help and the baby’s father appealed to the people for help.

The necessary drug is not available in Greece, but it has been approved by the US Food and Drug Association in May 2019. The toddler and his family must travel to Boston to receive this drug.

Cost for the medications is 3,000,000 euros.

Panagiotis – Rafael is suffering from Type I Spinal Muscular Atrophy (SMA I).

Spinal Muscle Atrophy is a rare, degenerative and until recently terminal disease affecting the entire musculoskeletal system, including swallowing and breathing. Type I is the most serious with a life expectancy of 2 years without treatment.

Prenatal screening is possible, but it is not covered by insurance funds and is not part of the pre-requisite examinations performed in every pregnancy.

Panayiotis-Rafael is still alive thanks to another drug, the Spinranza, approved in 2017 by the European Health Authorities. Greece was one of the first countries to offer Spinranza to patients with Spinal Muscular Atrophy, and its administration continues to this day.

This drug (Spinranza) aims to improve the symptoms and alleviate them and has actually made a significant contribution to improving the mobility of Panayiotis – Rafael. The total cost of €1,000,000 (€250,000 per year for 4 years) is covered by the Greek National Health Insurance Fund EOPYY.

Due to the treatment, the child has now managed to rest his head, sit unsupported and transfer things from one hand to another. Skills he would not have without this drug.

Panagiotis-Rafail cannot speak, cannot walk, lives in an isolated environment due to his weak immune system.

But this is not enough.

The necessary drug Zolgensma, designed to address the genetic cause of Spinal Muscular Atrophy and possibly halt the progression of the disease is in the USA. The drug has been approved to be given until the age of 24 months.

The total coast of this treatment, along with hospitalization at Boston Children’s Hospital, is about $3.5 million.

The toddler’s family filed a request with all necessary document to the Supreme Health Council that rejected the request on the grounds that there are no comparative studies on the efficacy of the two drugs when administered in combination and therefore information on this treatment is incomplete.

Health Minister, Vassilis Kikilias, came under fire on Greek social media for not helping the child. He said that there was nothing he could do on reverse the decision of the Supreme Health Council. According to reports over the weekend, he is trying to persuade the pharmaceutical company Novartis to achieve a better price for the drug.

On 27/9 the parents of Panagiotis-Rafail took the initiative to follow the example of little Antonis from Cyprus (a child with exactly the same illness) and launched a campaign to collect the necessary amount.

Publicizing the child’s story has fueled a huge wave of solidarity across the country. Fundraising events are being held, the story is being shared thousand times on social media.

The community of Greeks in Germany and the USA are being supportive in many way.

“Panagiotis will leave for Boston, we are sure about it. He will receive the treatment thanks to all these people,” his parents Giorgo Glossiotis and Ria Bakali told media.

By October 19, the sum of €2,138,000 has been deposited in the accounts of the association for people with disabilities MDA Hellas, that is collecting the money on behalf of Panagiotis-Rafail.

Reason: GLOSSIOTIS / GLOSSIOTIS

ALPHA BANK
Account No.: 121 00 2002 008467
IBAAN: GR2501401210121002002008467
SWIFT / BIC: CRBAGRAA
Reason: GLOSSIOTIS / GLOSSIOTIS
Beneficiary: MDA Greece

NATIONAL BANK OF GREECE
Account No.: 720/48001175
IBAN: GR3901107200000072048001175
SWIFT / BIC: ETHNGRAA
Reason: GLOSSIOTIS / GLOSSIOTIS
Beneficiary: MDA Greece

Donations are also possible via Paypal here.

No donation is too small or too big.

Facebook page “Be A Hero for Panagiotis-Rafail

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