x

Reflecting on life with cystic fibrosis

Natasha Onufrievas reports on frank discussions with her daughter Alice about life with cystic fibrosis.
Author: Olha Vovk, translated by Konon Pankratovich, www.deti.zp.ua Published: July 26, 2019, 21:30 1093

Alice and I were sitting and contemplating. Yes, cystic fibrosis is bad—very, very bad. It is tough, difficult, painful, and sometimes stokes ongoing depression. But you can find some good out of it.

First of all, there are new friends who understand you better. Mothers understand and support mothers; and children, one another. It’s like a tribe.

Thanks to or probably because of this, our children are the most harmoniously developed, in academics, sports, and arts. Practically everyone, to the best of his abilities and peculiarities, leads an active lifestyle and can serve as an example to peers who are instead engrossed in electronics.

Our girls are graceful and slender, and mothers try to get them to add even one more kilogram.

Travel opportunities - if that’s what one can call those trips to new cities and new hospitals. During these trips we see not only hospitals, but take strolls to see beautiful architecture and different places, meet new acquaintances who were previously unknown. They also help, support, and advise; furthermore, they become friends and members of your tribe.

But Alice noted that a hospital admission is a sort of a vacation. Nonetheless, she strives not to combine hospital stays and holidays. Each must be in its own time.

You come to understand the saying "The world is no good without good people" in a new way. Sometimes it seems that the world around you consists only of kind, sympathetic, and caring people. Thank you so much for this!

Yes, cystic fibrosis is bad, very bad. It is hard, painful, scary, difficult, sometimes unbearable. But we must always keep our hopes up, striving with great difficulty against heavy odds. We are thankful to all of you who are nearby and who are always with us. Alice and I are very grateful to you for your care and support.

Report on received donations and expenses


Happy Child foundation - effective help to the most needy children of the Zaporozhye region, Ukraine, since 2004

More than 16 years of trust of donors and benefactors, thousands of aid transaction processed every year. Full transparency in the usage of donation
You donated $231 992 in 2020

Our expenses in 2020

135 sick children: $127 468 
Medical equipment: $7 759
To disabled orphans: $25 169
To eco-village for orphans: $12 386
To orphans and poor families: $5 380
To adults ("Helpus" charity): $8 424
Administration and fundraising: $21 761
Total sum of expenses: $216 815 

$4 799 906 donated since 2007

They need help:

Kirill Karpachev (born 28 June 2000) and Timofei Karpachev (born 22 November 2011) – Cystic fibrosis, mixed form

Kirill Karpachev (born 28 June 2000) and Timofei Karpachev (born 22 November 2011) – Cystic fibrosis, mixed form

Mark Bondarev, 5 years old - Cystic fibrosis

Mark Bondarev, 5 years old - Cystic fibrosis

Yegor Bespalyi, born in 2017 - Severe cystic fibrosis

Yegor Bespalyi, born in 2017 - Severe cystic fibrosis

Vladislav Bogomazov, 6 years old - Cystic fibrosis, severe course

Vladislav Bogomazov, 6 years old - Cystic fibrosis, severe course

Pelageya Nesterenko, 2 y.o. – Cystic Fibrosis, Severe Condition

Pelageya Nesterenko, 2 y.o. – Cystic Fibrosis, Severe Condition


A Child Needs a Family: Vladislav Sh., born in 2003

A Child Needs a Family: Vladislav Sh., born in 2003

Child needs a family: Makar in born 2010

Child needs a family: Makar in born 2010

Children need a family: Anya in born 2016

Children need a family: Anya in born 2016