Their illness has not stolen their smile. Two Romanian brothers need a great Christmas gift: HOPE

Family News | December 12, 2025 | Disabilities, FAMILY | No Comments

Basilica.ro, December 2025 — “Dear Santa, please bring us the treatment for Ioan and Teodor.” That is what 8-year-old Maria Rusu from Bucharest wrote to Santa about two of her five brothers: Ioan, age 14, and Teodor, age three.

The two boys suffer from a rare genetic disease in which the body does not produce a protein needed for the proper functioning of the nervous system. Over time, this leads to progressive muscle atrophy and paralysis, as well as the loss of sensory abilities. The condition is called Charcot-Marie-Tooth Disease – Type 4J (CMT4J).

Ioan is confined to a wheelchair and cannot speak. “He writes on his phone or computer, and the apps can voice his messages,” explains his father, Cristinel Rusu, an eparchial inspector in the Education and Youth Department of the Romanian Orthodox Archdiocese of Bucharest.

He has not lost his smile

Cristinel and Valentina Rusu have six children. Two of them, Ioan (pictured above) and Teodor, suffer from an extremely rare and very dangerous genetic disease. Photo: Ioan and Teodor CMT4J Association

Even so, Ioan is a very cheerful and intelligent teenager.

“He’s clever, with a very well-developed sense of humor ever since he was a small child. When you tell a joke or make an allusion, he gets it instantly. And something somewhat specific to nonverbal children: he has a sparkle in his eyes — he communicates and smiles with his eyes,” his father says.

“Ioan really is a calm and cheerful child, and he smiles, but he knows he is sick,” says their mother, Valentina Rusu, a specialist in Internal Medicine and ultrasound.

“Just yesterday, when I asked him if something was bothering him, he started to cry and told me he was upset that the treatment isn’t starting sooner. He’s placed very, very high hopes in this treatment, even though I didn’t promise him he would be able to walk. He showed me how his spine is curving, because his scoliosis is getting worse.”

The science exists — but funding is needed for therapy

Ioan is 14 years old and confined to a wheelchair. His illness progressed to the point where he can only communicate by typing on a computer or other electronic devices. Photo: Ioan and Teodor CMT4J Association

The boys’ condition cannot be solved through surgery, because after surgery the same issues would appear again. The cause must be treated. Fortunately, advances in medicine now make it possible to develop various genetic therapies.

Ioan and Teodor could be treated with a single-dose injection that helps the body produce the protein necessary for neurons and for transmitting information through the peripheral nervous system.

The parents contacted Elpida Therapeutics, a U.S.-based biotechnology company specializing in therapies for rare genetic diseases, which has developed a treatment for this condition.

Thanks to the company’s foundation and its partners, scientific knowledge about treating CMT4J has advanced tremendously, to the point where they now have the expertise needed to produce the serum that can stop the disease’s progression and restore the children’s health.

Ioan and Teodor can be treated only if the family succeeds in raising 2 million dollars, the amount required for manufacturing the treatment itself.

The disease is reversible: Teodor can still fully recover

Teodor is only two years old and can still walk with the help of a special frame. But no one knows for how long. Photo: Ioan and Teodor CMT4J Association

Unlike Ioan, little Teodor’s disease did not manifest at birth; symptoms became evident at around one and a half years old, when the boy could no longer walk on his own, as he had before, but only with the help of a special frame that keeps him upright.

“Teodor doesn’t understand yet — he’s too little. He takes everything as it comes, because he’s only turning three at the end of December,” says Valentina Rusu.

The disease, unfortunately, is progressing, and Ioan can no longer articulate even simple words like “mama” or “water.” Fortunately, he can eat and laugh, but for everything else he is entirely dependent on those around him.

If he receives the treatment, Teodor has the highest chances of a 100% recovery from the disease. Ioan, after receiving treatment that will stabilize his body’s normal processes, will need to undergo certain surgical interventions.

The parents are fundraising for the treatment

The family refuses to give up — they are fighting for their two children. They created the “Ioan and Teodor CMT4J Association” and are raising funds without losing hope that their dream will come true.

The organization is active online and on Facebook and Instagram.

“The treatment will most likely be administered in Romania. What matters is that we have the money,” says the boys’ mother.

The Christmas — and post-Christmas — solidarity of Romanians in the country and abroad could make possible a pioneering medical effort that would bring this treatment to Romania, where other children in the country and across Europe might later benefit from it.

Healing of the Paralytic — Ioan’s favorite Gospel fragment

The good news is that medicine has advanced, and genetic therapies are now possible — but they are costly. The parents aim to raise the funds needed to produce the genetic therapy that already exists on paper, following research by a U.S. foundation. Photo: Ioan and Teodor CMT4J Association

“We place our hope in God to help us. And if it won’t be possible, He will still help us accept it. I’m moved by the love of so many people whom I’ve never met, and I’m amazed at how God has brought us together in this suffering,” Valentina Rusu says sincerely.

Ioan is a teenager, and his mother tries to prevent any feelings of rebellion: “I told him not to be upset with God, that he is a little angel and that God has His plan, that many people will find salvation through him, because they care for him.”

“I try to tell him: There are others who cannot see. And be glad that nothing hurts. There are children with cancer who suffer so much. You aren’t getting sick like that. You are a healthy child here with us, and we love you.”

Cristinel and Valentina Rusu try to offer him as many small joys as they can: pizza or burgers in town, evening reading, and similar treats.

“I read from the Bible to him often. He especially likes the stories where Jesus performs miracles. When I read about the Healing of the Paralytic, he smiles and is very happy,” his mother adds.

God works through people — let us be His hands in fulfilling this miracle!