Ádinnak sikerült! Segíts a hozzá hasonló,
izomsorvadásos gyermekeken, hogy
a lehetetlenből valóság legyen!

The three year old Adin it's like that suffers from a genetic disease, ami miatt néhány éven belül se mozogni, se lélegezni tudott volna, ha nem gyűlik össze a génterápiához szükséges 1,3 milliárd Ft. De a közösségi összefogás ismét megmutatta erejét. Ádin után, most más, Duchenne-szindrómában szenvedő gyermekeknek és családjuknak szeretnénk segíteni hozzánk érkező adományokkal.

Get to know Ádin's story

Kneifel Ádin was born in November 2020 in Debrecen, where he currently lives as the only child of his parents. He was a planned baby, born naturally after a problem-free pregnancy, much to the joy of his parents. This beautiful baby, with blue eyes and blond hair, stole everyone's heart. He continues to love being in community, charming both adults and children alike with his kindness and approachability.

Alig múlt két éves, amikor Ádin anyukája és apukája észrevette, hogy kisfiuk eléggé he became anorexic, so he was taken for a blood test, but the cause of the lack of appetite was not what the parents expected. Liver function values and CK levels were very high, so further investigation has begun. Finally, on 12/17/2022, the results of the genetic test arrived, according to which Ádin suffers from the extremely rare Duchenne muscular dystrophy.

A diagnózis megállapításajor a szülők összetörtek, hiszen akkor erre a betegségre még nem volt gyógymód. 2023 nyarán azonban az Egyesült Államokban és Dubajban engedélyeztettek egy olyan génterápiát, amely megállítja az izmok sorvadását, így a betegség elórehaladását. A gond csak az vol, hogy maga a gépterápia (a járulékos költségek nélkül) is 1,3 milliárd forintba került. Ádin és családja a közösséghez fordult, az emberek (a hétköznapi emberek éppúgy, mint közismert médiaszemélyiségek vagy cégvezetők) pedig a Krucsó család mellé álltak. Az összeg pedig 2024 tavaszára összegyűlt, Ádin pedig nyáron már meg is kaphatta Dubajban a kezelést. Ádin nemrég kezdte óvodát.

What can be known about this disease?

THE Duchenne muscular dystrophy az izomsejtek fokozatos pusztulásával járó veleszületett, örökletes betegség. Az izomsejtek helyét az izommunkára képtelen zsírszövet és kötőszövet tölti ki, ebből adódóan a beteg gyermek egyre erőtlenebb lesz. Az ebben a betegségben szenvedő gyermek tíz by the age of six he will be confined to a wheelchair, and within a few years it will spread to the heart and respiratory muscles. Az alapbetegségben szenvedők várható élettartama csupán 20 év.

at the age of 6

10 évesen

18 évesen

Those who will move every stone so that their little boy can be cured

Ádin's mother, Anikó Krucsó, grew up in Komádi, while his father, Adrián Kneifel, spent his childhood in Kunmadaras. Both of them studied in Debrecen and obtained their higher education there, where they met each other and have lived ever since. Adrián works as a project manager in the Debrecen office of HSA Ltd., and Anikó is a self-employed condominium manager. This is where Ádin arrived, who is dearly loved with all their hearts.

They faced every parent's worst nightmare when their child was diagnosed with a rare disease that leads to mobility impairment and a short life span. However, when a glimmer of hope for a cure emerged, they clung to it with all their might, even if it meant raising an amount that surpasses the imagination of an ordinary person. So, when Ádin is awake, they devote all their attention to him. But as soon as he lays his little head down to sleep, his mother and father work into the night organizing fundraisers, writing posts, building connections – seizing even the smallest opportunities to find more supporters for their child.

A kezelés, ami megadta Ádinnak a teljes, boldog élet esélyét

After decades of research in the United States, the first gene therapy for the treatment of Duchenne Muscular Dystrophy was approved in June 2023. This is a one-time infusion treatment designed to address the underlying genetic cause of Duchenne. The better the condition of the child at the time of receiving the treatment, the better condition can be stabilized in the long term.

A jelenleg csak az USA-ban és Dubajban elérhető génterápia its current price is HUF 1.3 billion.

A beteg gyermek egy arra kijelölt kórházban kapná meg a terápiát. Az infúzió előtt egy hónapig series of tests vár a gyermekre, utána pedig three month follow-up (pl. rendszeres vérvétel) következik.

Every donation is an important step towards the treatment that means recovery.

How can you help? If every tenth person in Hungary donated only HUF 1,300 to the family, then surely this unimaginable sum would be successfully collected. If you can't help the family with a donation right now, you can also support them by following the foundation's social pages and sharing the posts.

Use the Ádinos Facebook profile picture frame!

In the renewed donation form, you have the opportunity to donate, regardless of the amount, one a social profile picture with a unique Ádinos photo frame download if you choose this option in the form. It's not just a gift for your kindness on our part, but by using this you can provide additional help to Ádin, since you can spread the word about the collection even without separate shares.

Upload a picture, even your current profile picture, send your donation to Ádin (by money order, bank card or PayPal) and you can download your new profile picture with Ádin's picture frame.

Gift idea for Women's Day

Would you like to give your sweetheart, female relatives, or acquaintances some personal consideration instead of or in addition to the usual flower? How about a solution with which you also contribute to the recovery of a little boy suffering from muscular dystrophy?

You have nothing to do but to select that the template, which you like best (or more precisely, your partner would like it best), fill out the form below, where you can an offer worth a minimum of HUF 1,300t for Ádin's gene therapy. After pressing the button, you can already download the one for your donation postcard, which you can send electronically or print outyou can to the chosen one of your heart.

(IMPORTANT: we can only thank you with a postcard for the donation made on the form below, if you donated by bank transfer or via another form, we are also very grateful, but the postcard generation is only connected to this form. Thank you for your understanding!)

Choose a template!

From the templates below, you can choose the one you would like to receive in exchange for your donation. 

The name of the recipient and the name of the gift giver will be replaced on all templates with what you enter on the form, also for two soaps you can also upload a photo (relatively please upload a high-resolution, still image to it). You can write to the names full name, first name, nickname, can even be supplemented or replaced with some words (e.g. "your loving husband"). What is important is that neither to the recipient nor to the giver do not write a text longer than 25-30 characters!

To display unique text on templates, uploaded names and images Unfortunately, it is not possible to make subsequent changes, but of course if, despite following all our instructions, the postcard did not appear to you as in the pictures, then send it to us at the email address info@adin.hu and we will try to fix it as soon as possible. We hope it won't be a problem.

Template 1

Template 3

Template 2

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We can never thank them enough:

THEY DESERVE SPECIAL THANKS:

Kiemelt köszönet jár a Krones Hungary Kft-nek, akik a 2024.05.18-án, Debrecenben megrendezésre kerülő Krones Charity Run jótékonysági futás bevételének dupláját ajánlották fel Ádin gyűjtésének támogatására.
Az esemény hivatalos oldalát IDE KATTINTVA érheted el.

en_GBEN

Duchenne muscular dystrophy

Duchenne's muscular dystrophy is a congenital, hereditary disease characterized by the progressive destruction of muscle cells. The place of the muscle cells is filled by fat tissue and connective tissue that are incapable of muscle work, as a result of which the patient becomes weaker and weaker, until finally taking care of himself becomes a problem.

Duchenne muscular dystrophy mainly affects boys, it occurs in 1 in 3,600 boys born alive. It is found much less often in girls, they tend to carry the disease, i.e. they are not sick in this case, only the faulty gene is found in their genetic material. The actual cause of the disease is the abnormal production or lack of a protein called dystrophin. Because of this, calcium ions flow into the muscle cells in unlimited quantities, thus causing their destruction.

The disease is characterized by gradually developing, increasingly pronounced muscle weakness and a decline in intelligence. In infancy, the child is usually symptom-free, although a mild degree of muscle weakness can be observed in some of them: sometimes the difficulty in holding the head draws attention to the disease. Children usually learn to turn over, sit up, and walk in time. The disease usually becomes recognizable around the age of 3, when, due to the weakening of the muscles around the hips, the child can stand up by leaning on his knees. Climbing stairs is also a problem for him, his gait will be wobbly. In addition to these symptoms, the firmer feel of the calves and the outwardly muscular shape are striking. As age progresses, the breakdown of more and more muscle fibers occurs throughout the body. The patient's ability to walk deteriorates faster, approx. He stays until he is 10 years old, after which he is forced into a wheelchair. The symptoms of muscle weakness also affect the internal organs: due to the weakness of the pharyngeal and respiratory muscles, the patient easily swallows sideways, coughs with less force, so he is less able to cough up secretions from the lungs, which is why upper respiratory tract colds and pneumonia easily develop. For a child in a wheelchair, the function of breathing is further worsened by chest deformities and increased scoliosis. Life prospects are determined by the weakness of the respiratory muscles and the heart muscle. Later on, due to respiratory weakness, the child is put on a ventilator. In many children, the decline in intelligence is not severe, so they can complete a normal school.

The diagnosis is confirmed by genetic testing, detection of dystrophin deficiency, and CK testing. The latter test refers to the degree of muscle breakdown. Normally, this value is below 160, and in these children it is several tens of thousands. The disease continues to progress, in the final stage it also affects the heart and respiratory muscles, as a result of which patients die at the age of 20 on average.

Steroid treatment slows down the progression of weakness in childhood muscle death, but the process continues anyway, and the muscle cells break down more and more. With appropriate physical therapy, you can extend the life of the fibers that are still intact. Swimming in warm, 32-34 degree water helps to improve blood supply to the muscles. As the disease progresses, the cooperation of physiotherapist and doctor is necessary so that together with the patient they can decide on possible tendon surgery or the use of medical devices to help with movement. Surgery may also be justified in the case of advanced scoliosis.