Supporting Ukrainians living with Rare Diseases

Dear friends,

We want to sincerely thank all GlobalGiving donors for your ongoing support — because thanks to you, we were able to help just in time.

Recently, a situation occurred that could have ended in a desperate struggle for survival. But your kindness made all the difference — and we want to share this story with you.

It was the end of the workday on Friday, October 10. Ukraine was still reeling after another massive night of shelling.
We received a short message on Viber:

“Sorry to bother you… I’m in trouble!”

It was Natalia, the mother of 2.5-year-old Sofia, a little girl with Krabbe disease — a rare, severe genetic disorder that gradually destroys the nervous system and takes away the ability to move, swallow, or even breathe.

During a power outage caused by the shelling in Dnipro, Sofia’s pulse oximeter broke down. This stationary medical device (worth about 8,000 UAH / $200) is constantly connected to her finger to show oxygen levels in her blood. When the oxygen drops, the oxygen concentrator must be turned on immediately — without it, Sofia simply cannot live.

Sofia breathes only through a tracheostomy — a special tube in her throat connected to a non-invasive ventilator (NIV). On that day, things got even worse: the family’s neighborhood had no electricity for over 14 hours.

To understand the danger — the NIV’s internal battery lasts up to 12 hours, and the oxygen concentrator works for only 3 hours on the backup power station our foundation provided last year thanks to GlobalGiving support.

To save their daughter, Natalia’s husband and teenage son carried the 30-kg power station on foot from the 9th floor to a nearby supermarket — the only place with a generator — to recharge it.

Natalia called the hospital to ask if she could have Sofiia admitted if power didn’t return. But for that, a resuscitation ambulance and an available ICU bed were required, so the doctors advised to wait a few more hours — and if electricity didn’t come back, to call the ambulance immediately.

For Natalia, the greatest fear today is not russian rockets or drones, and not even the destroyed home they left behind in Myrnohrad, Donetsk region.
Her fear is the blackout — because when the lights go out, the equipment keeping her child alive goes out too.

When Dnipro is under attack, Natalia cannot even go to the shelter — Sofia cannot be disconnected from her respiratory devices, not even for a minute.
The whole family — her husband, two older children, and elderly parents from Pokrovsk — now live together in one small rented apartment in Dnipro.

Despite all this, Natalia remains incredibly strong.  And we stand by her and her family. 

Our foundation immediately helped purchase a new pulse oximeter and will send the damaged one for repair.

We thank all our partners and every donor who supports our work through GlobalGiving!
Your compassion saves lives. 

Links:

• Sofia`s story