FRAGILE CHILDREN

2016-06-29

Emilijus suffering from a rare brittle bone disease urgently needs telescopic rods.

Fragile children are called so since they are born with a brittle bone disease.

Emilijus, a lively and cute 8-year-old boy, has already had more than a hundred bones broken, the first ones as far as in his mother’s womb…

Every day for Emilijus is a battle with a brittle bone disease, which in medicine is called osteogenosis imperfecta. Bones extremely brittle as glass break from the slightest pressure.

Despite aching bones, which were broken multiple times, ever smiling Emilijus has an immense wish to walk, attend school and play with children.

For funds donated 3 years ago during the TV3 wish fulfillment event expensive telescopic rods were bought for the boy, which helped to correct and strengthen axes of Emilijus’ bones. Thanks to them the boy stood up and started to walk with a walker.

Currently Emilijus, driven by limitless perseverance, already makes first steps himself. The only problem is that he has already overgrown the rods he has now, and the rods have “broken lose”, multiple re-operations are needed. Health Insurance Fund allocates no money for it.

Emilijus’ family lives in Šakiai district, Kriūkai eldership. The family raises 3 more little brothers. The parents make their living from social benefits and little Emilijus’ disability.

Dr. Emilis Čekanauskas, the Head of the Children’s Traumatology – Orthopedics Department at the Hospital of Lithuanian University of Health Sciences, is an attending physician of the little patient with the rare disease and seeks help from good people.

It is no coincidence that the call for help has reached us. After visiting Emilijus at the hospital and talking to the doctor, we realized that we need to look for help immediately, as nowhere else to look for help….

The price of one telescopic rod is 2000 Euro. Emilijus needs four in order to strengthen the bones so he can continue to grow and learn to walk.

The price of metal rods that will strengthen Emilijus steps is 8000 Euro.

You may support Emilijus and make a donation as a bank account transfer to the Foundation’s bank account LT327300010132901508 „Swedbank“, AB Alexander Gridin Foundation, legal entity code 302864683, indicating the purpose of the payment as “for Emilijus”.

ANY support provided is an INVALUABLE contribution to this boy’s future. Let’s join our forces and help Emilijus to fulfill his biggest dream – TO WALK!

According to the PhD E. Čekanauskas, osteogenesis imperfecta is an extremely rare and so far incurable disease. Each year 2-4 patients are diagnosed with it. 40% of all patients are not able to walk if they have not learned do to so before they become one year old.

“Osteogenesis imperfecta is more common in boys then girls. The disease is caused by a mutation in certain genes. It is does not caused by race, geographic location or social class” – says E. Čekanauskas.

The disease progresses until the age of 16-18. Later hormonal changes occur and fractures become less frequent. Disease flares up again only at the older age. According to the doctors, later on children with the genetic disorder can also live a perfectly normal life.

The implants are not compensated by the state.

Doctors, all over the world, can only strengthen the bones by implanting special telescopic rods and prescribing medicines in order to boost calcium metabolism, mineralization and to reduce the possibility of fractures.

In Lithuania, medication for these children is purchased only in exceptional cases. As telescopic rods are not compensated by the state, so far all the implants have been purchased with the funds donated by the people from all over Lithuania.