Posted on December 16 , 2020
Saving Baby Maria
Once upon a time, in a place Called called Ukraine, a couple were blessed with fraternal twins on the 16th of June 2020. A healthy boy and this beautiful girl they named Maria. All was heavenly in the Sokhno family. It was the 16th of June, 2020.
Hardly a month had gone by when this baby girl was diagnosed Spinal Muscular Atrophy (SMA) type 1. It is a progressive and rare genetic disease, unfortunately, the leading cause of infant death. The Sokhno family was devasted. But there is not much in this universe, more powerful than the love of a mother for her child, and Maria’s mother was not about to give up easily. In her desperation for saving Maria’s life, her mother Daria (nick named Dasha) found that the only treatment possible is a gene therapy infusion that can help Maria and completely cure her. Without it, her life expectancy is a maximum of 20 months.
This gene therapy infusion comes in the form of a single injection of Zolgensma. This medicine has been registered only in the great USA, is approved by the FDA and is available in Boston Children’s Clinic.
It would be such a good ending to this story if I could say that the Sokhno’s took there their baby to Boston and they gave her the injection and she lived happily ever after…….
But those endings only happen in the movies -, in real life it takes a miracle for such happy endings. And that’s just what baby Maria needs: . Aa miracle!
Fortunately, the ending of this story has yet to be written. In todays’ today’s age of social media and interactive reality, YOU the reader of this article have a say whether Baby Maria gets her miracle.
You see, as great as America is, where ever thingeverything is possible, there is a fine print which says ‘at a price’.
The price of this treatment is $2,341,750.00 USD. Most of the cost is for the injection, which is charged by the drug company that makes it, and Boston clinic requires full payment up front before the baby can even come to the hospital. This is such a huge amount, most people would simply give up , - not a mother, not Dasha. She is leaving no stone unturned, and with the help of friends has managed to raise close to 70 % of the money. but However, the time is running out as they the baby needs to get to Boston by the beginning of next year.
So, HelpXchange which was being built for exactly such projects, has made “Saving Baby Maria” its mission and is doing everything it can to get as many people involved, not only to raise the rest of the money but come up with other innovative ways to contribute to a solution - , such as persuade the drug company to take charge less money, or et get various service providers such as hotels, airline, hospitals etc. to DONATE their services to reduce the money needed to SAVE BABY MARIA.
HELPXCHANGE COMMITMENT :
We will try aim to raise $341,750.
All the money donated goes to pay for Maria’s Treatmenttreatment.
No individual gets the money, the Service service providers are paid directly from the donations.
All the transactions are totally transparent .
All ideas and suggestions to help save Maria’s life are welcome and will be given consideration.
Two such ideas we will be looking into:
Maybe Drafting a petition to get the drug company to reduce the payment cost or get paid in instalments.
May be the State or someone a similar credible entity/person can guarantee the payment until the money is raised so that they can get the treatment started.
So will this be a HAPPY ENDING ?
That is up ENTIRELY up to you and me. It is up to US.
To find out stay tuned to HELPXCHANGE.org.
Individually we all have problems, but together when we help each other solve those problems, only then do we truly enjoy and understand the meaning of life. And there seem to be so many problems all over around the world - and we can continue to see them as divine punishment from god or we can see them as opportunities to help solve those problems and experience the true joy of life.
“While competition is a good way to succeed for a few.
Collaboration is a BETTER way to succeed for the many”
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