The five-year-old Ukrainian girl, Rimma Makarova, suffers from a deadly neuroaxonal dystrophy. Her parents are trying to secure funding for a treatment that costs 2 million euros.

[

Five-year-old Rimma Makarova from Ukraine is fighting a serious and rare disease – childhood neuroaxonal dystrophy (INAD). This is a genetic disorder that destroys the brain and the central nervous system.

Rimma Makarova is the only child in Ukraine diagnosed with INAD.

Without treatment, the disease progresses rapidly, and the chances of survival remain minimal. Over time, the child loses all motor and cognitive abilities: she stops talking, walking, seeing, and eventually breathing on her own.

To save Rimma, a unique gene therapy has been developed, which could halt the progression of the disease and save her life.

This has been reported by Ukrainian media.

However, the cost of treatment exceeds 2 million euros—an amount that cannot be gathered without the support of caring individuals.

As a charitable organization states, “Country of Good Deeds” (Ukr. “Kraina Dobrich Help”):

“Meet Rimma. This little girl can no longer smile, cannot pronounce simple words, cannot hold or turn her head. A terrible and extremely rare genetic disease is killing this fragile flower every day, stripping away her memories, her ability to move, and communicate. Very soon, Rimma may stop seeing and even breathing.”

The usual medicines will not help because the cause of the disease is a genetic defect. Thus, the only way to save the child is through specially developed gene replacement therapy. Such treatment could halt the disease’s progression and save her life. Very soon, this medicine will become available on the market, but can Rimma receive it? Or will she remain trapped in her own immobile body forever?

The girl’s parents cannot afford the full cost of the treatment, as it amounts to 2,000,000 euros. The family managed to gather about a quarter of the required amount through enormous efforts, but their financial resources have been exhausted—they can’t cope without help and support.

Rimma has only a few years to stop the disease; otherwise, damage to her brain and nervous system may become so severe that she cannot be saved. It is crucial that Rimma does not lose precious time and receives treatment as soon as it becomes available on the medical market.”

Symptoms of the disease

Childhood neuroaxonal dystrophy (INAD) is a rare disease caused by a mutation in the PLA2G6 gene. Symptoms begin to appear at an early age and progress rapidly:

• Deterioration of coordination of movements and gait
• Loss of the ability to speak
• Gradual visual and hearing impairment
• Disruption of chewing and swallowing reflexes
• Respiratory failure

Unfortunately, in most cases, the disease leads to a fatal outcome in childhood if emergency measures are not taken.

Support from charitable foundations

Ukrainian charitable organizations have come to the aid of Rimma’s family. The fundraising efforts include:

• Foundation “Crimean Dobrich Help” (also “Dobrofond”)
• https://dobrofond.org/
• https://www.instagram.com/kiev_fond/
• https://www.youtube.com/@kraina_dobryh_sprav

– This organization actively spreads information about the girl’s condition and organizes donation drives.

• Ukrainian volunteers and activists – They organize charity events, fairs, and flash mobs.

Charity initiatives and media support

Promotions are being held across Ukraine in support of Rimma. For example, a charity fair took place in Mykolaiv, with funds raised aimed at her treatment.

Ukrainian media have reported on this:

• Suspilne Mykolaiv
• DNIPROTODAY

In addition, information about the girl’s condition is actively shared on social media platforms, including Instagram.

What parents say

Rimma’s mom, Inna Makarova, is doing everything possible to save her daughter. She actively communicates with doctors and volunteers, raises awareness about the issue, and searches for ways to raise funds. The family has already gathered about 25% of the required amount, but this is insufficient, and time is against the girl.

“Every day, our girl loses some abilities. We are afraid that unless we can collect the necessary amount in time, it will be too late,” says Inna.

How you can help

Those who want to learn more about Rimma’s condition and how to provide support can visit the following official websites:

More information can be found at:

https://www.instagram.com/kiev_fond/reel/C1UBcIVNQ9u/

https://www.facebook.com/groups/481773300588518/

https://help-rimma-makarova.online/

https://dobrofond.org/terminova-dopomoga/rymma-makarova/

Conclusion

Rimma Makarova is a little girl facing a terrible challenge. Yet, her story is not just a tragedy, but also an example of how people can unite to save a life. Charity efforts are ongoing in Ukraine, the media are raising awareness about the situation, and volunteers are tirelessly seeking ways to support the family.

Let us hope that Rimma will receive the critical treatment she needs and will be able to overcome this disease.

…

Read on WhatsApp – Channel Nanovo ↓ – Israeli news
Read in Telegram – Channel Nanovo ↓ – Israeli news