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NADĚJE PRO HONZÍKA

FUNDRAISING FOR JOHNNY (english)

 

FUNDRAISING FOR JOHNNY

272802728/5500

 

THANK YOU for visiting this website that I have create for a fundraising campaign for my son, Honzík's, medical treatment. The treatment is very expensive, and is as yet unavailable in the Czech Republic. Due to the fact that it is still considered an EXPERIMENTAL TREATMENT, it is not covered by the government or by insurance. Despite this fact, it has become our only option and HOPE for improving his physical health with the progressive degenerative disease, Duchenne muscular dystrophy (DMD).

THE MAIN GOAL OF THIS FUNDRAISING CAMPAIGN IS FINANCIAL SUPPORT FOR A STEM CELL TRANSPLANT.

At the clinic in Tel Aviv, http://www.ctcicenter.com/  the price for this treatment is $42,000 (every 6-12 months)
***this price does not include other expenses such as transportation, accommodation, etc.***

THIS PRIVATE FUNDRAISING CAMPAIGN IS SUPPORTED BY PRIVATE GIFTS, PRIMARILY FROM FRIENDS AND LOVED ONES WITH OPEN HEARTS srdeční

Other possible uses of these funds can include to suitable aids, rehabilitation, or activities that can improve Honzíček's quality of life.

Respectfully, to all who are willing to help,

Mummy Dita

 

"The frightening label of 'dystrophy' conceals a group of even more frightening genetic muscle diseases. The most common of these is Duchenne Muscular Dystrophy (DMD), which affects one out of every 3,500 children, mostly boys. The cells of the affected individuals have a dysfunctional dystrophin gene (dystrophin is the protein that supports and reinforces muscle fibre membranes). The muscle fibres are therefore fragile, and cannot withstand normal strain. A child's body has a relatively good regenerative ability, as well as perhaps even  sufficient enough supply of so-called muscle stem cells, so, for a limited period of time, they are able to replace the damaged fibres with new ones. However, this is a hopeless and unequal battle, because the muscle degeneration gradually takes over, and affected individuals rarely live longer than thirty years of age, the final blow being a total collapse of the muscles necessary to breathe. Life with dystrophy is like a dark tunnel in which it is better to not see the end. There are very few glimmers of hope for a cure."

PROGRESSION OF THE DISEASE

  • DMD boys are born without any symptoms, and their development progresses normally for the first several months.
  • Around 2–6 years of age, the first symptoms begin to appear; the shortage of dystrophin begins to become apparent, the result of which is a replacement of the atrophying muscles with fibrous tissue.
  • Affected boys gradually begin to experience problems walking, running, getting up from a prone or seated position, (the pelvic girdle is the first to present signs of the disease), and myopathy of the lower exterminates begins to develop.
  • The body compensates with what is called pseudohypertrophy, which is evident in the compensatory enlargement of the calf muscles.
  • This leads to the child being bound to a wheelchair (at around 12 years of age), and damage to the girdle muscles of the upper extremities and  kyphoscoliosis as well.
  • Besides the skeletal muscles, the muscles of the heart are also damaged, which can result in dilated cardiomyopathy and subsequent heart failure.
  • Another accompanying symptom is shortness of breath (due to the impairment of the muscles used for breathing, which can progress far enough that artificial ventilation may be necessary).
  • Death occurs around 20 years of age, which can be caused either by repeated severe bouts of pneumonia or heart failure.

For a number of years, a group of scientists have been working with a type gene therapy that can have the ability to skip this genetic mutation (exon skipping) so that the body is able to produce functional dystrophin. This field offers a glimmer of hope for a better life, but only for select cases (the most common types of mutations). The method can teach the body to produce dystrophin, but cannot heal already damaged and degenerated muscle tissue. This, in turn, however, can be achieved by cell therapy, which is effective for many other similar diagnoses, such as multiple sclerosis and other neurodegenerative diseases.

Currently, cell therapy has become a source of hope for Honzík and many other boys with DMD, because it can help them maintain improved physical health for a longer period of time.

 

source: 

http://www.osel.cz/2303-svetlo-nadeje-v-lecbe-dystrofie.html

http://www.wikiskripta.eu/index.php/Duchennova_muskul%C3%A1rn%C3%AD_dystrofie

 

About us

Honzík was born on one of the most beautiful snowy days in January shortly after midnight. He was a happy Sunday baby who took his first breath at a Krumlov hospital after an uncomplicated water birth.                             

Regular medical examinations in the first three years of his life did not reveal signs of any type of disease. Our little boy was developing exactly as he should have been. He was a very kind, sensitive, and easy-going child. Besides the chicken pox, which he caught when he was ten months old, he was never sick.   

However, around three years of age, he began to ask to be carried much more often than other children his age. I remember how I used to tell him, "just walk nicely," until one summer day, Honzík began crying that his legs hurt, and he got his first muscle cramps in his calves, which became the impetus for visiting an orthopaedist, and was the beginning of our story with a new and completely unexpected storyline.                                                                                                                                                

Neurological testing, EMG (a test that records muscle function), and ultimately genetic testing confirmed the most severe type of muscle disease (DMD), a disease that is said to have no mercy or cure.

                In an instant, my world became dark, my legs literally gave way, and my inner pain attacked my entire body. Soon, however, the entire process took on an entirely new direction. LIGHT, STRENGTH, HOPE, FAITH, DETERMINATION, LOVE, CONVICTION…as if all of the life forces had been activated. I decided that I would have a healthy son, and pictured how my maturing young man will one day ask me to dance. This was the beginning of our battle against fate. I wanted to prove to the world that something that has been labelled as a lost cause can, in fact, be won. At that time, I did not realise how challenging a task—one that that has the ability to rob a person of so much strength—I had set for myself.        

Today, it has been exactly five years since Honzík's daily life began to include intensive exercise, rehabilitation, stretching shortened ligaments, massages, swimming, and countless types of dietary supplements with vitamins, minerals, and herbs, so that we could keep him in good enough condition that he can walk. In the past few years, we have literally travelled halfway around the world seeking help.

WILL WE BE ABLE TO FIND IT NOW? I cannot think of anything on this earth that I could want more than this. 

Tomorrow, Honzík will bring home his second grade report card from his Waldorf school that he loves. He had become popular with his classmates, but it seems that later there came a period of change, maybe a bit of a separation, a worsening of his condition, that began to somewhat isolate him from the other children and gradually exclude him from many activities. However, Honzík is nevertheless a social child who loves to laugh and devise all sorts of silly antics. Today, the children are once again more attentive to him, and their relationships have been renewed. He is adored by his family, even if we parents were unable to remain together and our paths diverged. Accepting and becoming accustomed to the fact that Honzík needs increasingly more help and assistance is not easy for anyone around him.

Life is a succession of various phases, and I am convinced that I will once again be ignited by the hidden life forces that I have lost.

D.B.

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