БФ "Открытые ладони" / CF Open Palms
Понедельник, 18.12.2017, 08:16



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To give help to our kids you don’t need to be nearby – sometimes it is even great to be far away!  Because in that case you can make out-of-reach things accessible! If you live in the USA – this is awesome! Every Ukrainian family that parents a child with mucoviscidosis dreams of friends-helpers from the USA specifically.

 

Mucoviscidosis (cystic fibrosis) is a hereditary genetic disorder that imparts hyperviscosity to all the secretions of the body. This generates serious damage to the respiratory and digestive systems. The affected person’s lungs are constantly obstructed with thick mucus that one cannot expectorate without help – the big sets of exercises are necessary to cough it out and clear the lungs for breath. Every meal is accompanied by enzymatic drug in order to provide digestion. And even so, for children with cystic fibrosis it is too hard to gain weight, almost always they have a weight deficit and need extra specialized high-caloric nutrition. One of its best kinds, Scandishake, is on sale specifically in the USA. Its particular value is that only this nutrition is suited for the patients with a threat of diabetes, and this is a common complicating disorder for people with cystic fibrosis. Likewise, the fat-soluble vitamins A, D, E, and K cannot be absorbed by the body with the cystic fibrosis gene. Consequently, young children are delayed in physical and intellectual growth and development, their skin peels and chaps, they have poor sleep and very frequent colds which in case of a person with mucoviscidosis end in hospitalization and easily change into pneumonia. The only way to replenish the deficit of vitamins is to take them in a special water-soluble form, and this kind is on sale only in the USA. Besides, every person with cystic fibrosis must take a lot of supporting drugs daily (even antibiotics are taken continuously when it comes to mucoviscidosis), and at least twice a year go to hospital for the standard course of intravenous antibacterial therapy.

The treatment of cystic fibrosis is multicomponent and expensive, but, while following the therapy, it enables several decades of full, productive life. Unfortunately, in Ukraine, due to inaccessibility of many treatment components, the average life expectancy for people with mucoviscidosis is 14 years, with no more than a fourth of children able to cross the edge of adulthood. Therefore, every gift of help – be it a single action or a continuous support – is extremely important for us! Our program Oxygen.ua is working in order to make the treatment as accessible for our kids and adults with mucoviscidosis as possible, therefore extending their life expectancy and increasing its quality.

 

Sowhat exactly and for whom can you give?

  1. AquADEKs Vitamins

- you can pay single time for vitamins, any form (liquid, soft gels, chewable), any quantity – every unit will find its recipient . Generally, we order them at amazon.com or ebay.com, for example:

AquADEKs liquid (designed for babies from birth to 3-4 years of age) here

AquADEKs chewable (designed for kids from 3 to 10 years of age) here

AquADEKs soft gels (designed for kids from about 5 years of age and adults) here

- you can take specific child under long-term care – it means to regularly pay for and to send them the appropriate vitamins (1 unit a month). To see the kids who are on the waiting list for their “vitamin angel”, please visit https://www.facebook.com/OpenPalms/posts/872975162797756

  1. Specialized nutrition Scandishake

- you can pay single time for any quantity, any flavor – every unit will find its recipient. Generally, we also order them at ebay.com, for example,here.

- you can take specific child/young person with extremely low weight under long-term care – it means to regularly pay for the specialized nutrition (2-4 units a month). It is the biggest need of our patients who have diabetes or its threat together with mucoviscidosis: Nastya Bondar,Valeria GorbonosOlena TaraKatrusia Bondarenko.

  1. Money

- you can make a targeted/regular transfer to help a specific child or young person with mucoviscidosis,

- you can make a targeted/regular transfer to the common fund of the Oxygen.ua program, from which we pay for the most urgent needs.

How to transfer?

Via PayPal: sergey.liskovoy@gmail.com (through the transfer to a friend option), it is obvious to note “transfer to a fund, MB” in the comment.

To the Fund’s bank account – it is specified here

Via online transfer for the project of targeted aid to young mother Olena Tara through the Ukrainian philanthropic marketplace - here

  1. Humanitarian supplies

- medicine: Creon 25000 un, Creon 40000 un., ACC 200 mg, ACC 600 mg, Fluimucil-antibiotic, Colomycin, Meronem, Ursofalk, Pulmozyme, Tobramycin.

Perhaps, you could get in touch with your local peer support group of patients with cystic fibrosis or look for such patients through the local cystic fibrosis center and ask them to donate to us remains of medicine (we know that they are always available). In Ukraine, the government gratuitously provides no more than 10% of the medicine at best; patients have to purchase the rest themselves, which most of them cannot afford. This is one of the reasons of too short life expectancy of our children with mucoviscidosis.

- kids’ stuff (toys (except for the soft ones), clothes and footwear, anything for a children’s room – it may be second-hand, but in excellent condition). Now the Fund is preparing the launch of the kid stuff philanthropic store, all the profit from which will be headed to the help for the Fund patients. So we will appreciate if you join the diversification of our store’s assortment with good-quality items.

  1. Information and fundraising ideas

You can also spread the information about Oxygen.ua program for Ukrainian patients with cystic fibrosis among your contacts – perhaps, some of them will also want to join. Maybe you know any local resources where we can look for help for our program’s patients and maybe you could undertake communications with them. Perhaps, you joined some local fundraising campaign which you liked and we could adopt it for our program. And maybe, you yourself could come up with an interesting event to help us raise funds for the program. Please, share the information.

The contact address is mariya.aylen@open-palms.org.ua. We will be very glad to receive a letter from you and to do something interesting together!

Помочь легко!

 





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