A full life for Ádin,
positive perception of your company
can mean your support!

Three-year-old Ádin suffers from a genetic disease that will render him unable to move or breathe within a few years. However, if we collect the 1.3 billion HUF required for gene therapy, he can live a healthy, full life.

Get to know Ádin's story

Ádin Kneifel was born in Debrecen in November 2020, and currently lives here as the only child of his parents. He was born naturally as a planned baby, after a problem-free pregnancy.

A little over a year ago, Ádin's parents noticed that he had become quite loss of appetite, so they took him for a blood test. The liver function values and CK level were very high, leading to further investigations. Finally, on December 17, 2022, the results of the genetic test arrived, revealing that Ádin suffers from the extremely rare Duchenne Muscular Dystrophy. The cure for this condition is only available in the USA, and the cost of the treatment is 1.3 billion Hungarian forints.

Briefly about Ádin's illness and treatment

Duchenne Muscular Dystrophy is a congenital, hereditary disease characterized by the gradual degeneration of muscle cells. Fat and connective tissue, incapable of muscle work, replace the muscle cells, making Ádin increasingly weaker. Around the age of ten, he will be confined to a wheelchair, and later, the disease will also affect his heart and respiratory muscles.

The first gene therapy for the treatment of Duchenne Muscular Dystrophy has been approved in the United States. This is a one-time infusion treatment, and the better Ádin's condition when he receives it, the more effectively the therapy can stabilize his condition in the long term.

Currently available only in the USA, gene therapy can only be used in children aged 4-5 years its current price is HUF 1.3 billion.

Good for Ádin, good for you - everyone wins!

We are aware that a corporate donation is for humanity business factors also play a role in the decision. Of course, this does not reduce the moral value of the donation, nor its importance in Ádin's recovery! However, if these factors may have kept you from making a decision about donating, allow us to mention a few reasons why your company can also benefit from Ádin's support:

  • social responsibility is now an important factor in family-friendly trademarks and various awards and competitions
  • increasing positive perception and commitment from your own employees, partners, and customers
  • we will feature your company's logo on our website and on our continuously growing Facebook page, which already has 4,400 followers
  • we will send you an 'Our Company Supported Ádin's Healing' emblem via email, which you can display on your website, and a banner that you can use in your email signature
  • we will also send you a certificate personalized with your company name, which you can share on social media or even print and display in your office
  • of course, we also send a certificate of the public donation, which thus reduces the tax base

Send your donation online in a minute!

This much has been collected so far for Ádin's treatment:

182 912 160 Ft / HUF 1.3 billion

They deserve special thanks

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.