Benji’s Story: A Mother’s Hope and Struggle – Run, Benji, Run!

Benji’s story began with a shocking diagnosis, but thanks to his mother’s perseverance and the power of their family’s love, a hopeful future is unfolding.

written by: Continent Surfer

Benji lives with Duchenne muscular dystrophy, a disease currently considered incurable by medical science. However, his mother has not given up and is doing everything she can to ensure her son receives gene therapy, which promises to improve his quality of life and extend his lifespan.

A Diagnosis That Changed Everything

Benji’s mother recounted that her son was born from a completely healthy pregnancy, and for the first few months, there was no indication of a serious illness. At three months old, a fever, and advice from a doctor relative led them to Heim Pál Children’s Hospital. There, a thorough blood test revealed that Benji’s CK (creatine kinase) level was about one hundred times higher than the normal range. Although muscle disease was not suspected at that time, genetic tests sent abroad at six months sadly confirmed their worst fears: Benji suffers from Duchenne muscular dystrophy. “We were quite shocked,” says Benji’s mother. “But thankfully, we pulled ourselves together in a few days and decided not to despair or become bitter, but to try to live each day and focus on the good things”. This attitude has permeated their family life ever since.

Daily Life with the Illness

Despite the severe diagnosis, Benji’s daily life is as normal as possible. In the mornings, he takes his steroid – which he does by himself! — then goes to kindergarten, where he fortunately also receives developmental therapy. In the afternoons, he plays at the playground with his grandmother, who is a physiotherapist, so Benji also receives his vital stretches. In the evenings, the family dines together and reads a lot. His mother consciously strives to ensure that their lives do not revolve around the illness. Although Duchenne disease is currently incurable, advances in medical science now promise a much better quality of life and longer lifespan for patients. The steroid Benji takes will likely extend his ability to walk by years, although it can unfortunately have severe side effects.

A Spark of Hope: Gene Therapy

Approximately a year and a half ago, the first existing gene therapy for this disease became available, which hundreds of Duchenne patients have already received, primarily in America. Benji’s mother is part of an American parent group where she reads about gene therapy experiences: “Overall, they are very positive, satisfied,” she says. This hope launched the “Run Benji Run” campaign. Many tried to dissuade them, saying it was impossible to raise so much money. However, Benji’s mother persisted: “Which parent wouldn’t try every possible means for their beloved child?”

The “Run Benji Run” Campaign

The campaign is progressing step by step and is continuously evolving. Numerous ongoing projects help with fundraising and raising awareness:

• Run Benji Run Facebook page and Messenger: The central online platform for the campaign.
• fussbenjifuss.hu website: All important information can be found here.
• fussbenjifuss@gmail.com: Contact via email.

Benji’s mother believes their biggest “project” is still Benji and his sister, Viola, as they want them to have a normal, happy childhood. The beginnings were harder than expected, but their mother is infinitely grateful to those people whose “heartfelt cause” Benji’s life becomes. For her, every share, like, expression of love, donation, and encouragement falls into the category of “greatest success”. It was especially touching for her when preschoolers brought their small change for Benji, or when one little kindergartner began to pray for him.

How Can We Help?

Benji’s family is grateful for all help, and there are many ways to support them:

If you cannot help financially but would like to:

• Join the Run Benji Run Facebook page.
• Like, comment on, and share their posts to reach as many people as possible with Benji’s story.
• Services can also be offered here (e.g., hairdressing, language lessons).
• Using the QR code on the www.fussbenjifuss.hu website, you can also transfer directly to the Fuss Benji Fuss Foundation when returning glass bottles at REpont.

If you can help financially:

Direct transfer as a private individual:

Fuss Benji Fuss Foundation

Account number: 11600006-00000002-00333566

IBAN: HU85 1160 0006 0000 0002 0033 3566

SWIFT: GIBA HUHB

Direct transfer as a company:

The Csodacsoport Foundation (as a public benefit foundation) can issue a certificate for donations suitable for tax base reduction.

Before corporate donation, contact them at: fussbenjifuss@gmail.com.

Csodacsoport Foundation

Tax number: 19239778-1-43

Account number: 10401983-50526970-69541012

IBAN: HU80 1040 1983 5052 6970 6954 1012

SWIFT: OKHB HUHB

Remark: Benji

Further opportunities to help:

• Apply to be a running ambassador: If you would like to represent Benji’s cause in any sport and wear the Run Benji Run shirt, write to fussbenjifuss@gmail.com.
• Place a collection box or organise a charity fair: The family can provide lockable collection boxes.
• They are also grateful for any private initiative.

Benji’s mother’s biggest dream is that after the treatment, Benji will run really fast, like Forrest Gump, and learn to play the piano. This image inspires them every day.

The most up-to-date information can be found on the Fuss Benji Fuss-Run Benji Run Facebook page. “Let’s persevere, preserve love, and never despair, because there is true Hope!” — Benji’s mother sends this message to all families in similar situations, and it also sustains them. Benji’s story can empower all of us and shows that love and perseverance can move mountains. Let’s help Benji together to make his dream come true!

Did you know?

Did you know that Duchenne muscular dystrophy (DMD) is a severe, inherited, progressive muscle disease that primarily affects boys? It’s caused by a genetic defect on the X-chromosome, leading to a lack of a vital protein called dystrophin, which is essential for muscle function. Symptoms usually appear between ages 3 and 6, and while there’s currently no cure, treatments aim to manage symptoms and slow progression.

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Source(s):

Personal interview

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