2519 Дарители
BG/EN
Здравейте, скъпи Дарители!
Казвам се Елена Георгиева Лазарова и съм майка на малкия Христо или Крис както го наричаме на галено.
Как започна всичко при Крис? - Малко след навършване на втората си годинка и след като беше изкарал дребна шарка, започна непрекъснато да иска да го носим на ръце. В последствие нещата се влошиха - започна да отказва да върви и да губи баланс. В България личния лекар и ортопед бяха убедени, че всичко е наред и това е временно. Ние живеем в Англия и при нашето прибиране нещата станаха страшни.
Крис започна да пада и да се удря. Заведохме го в спешното отделение в Детската болница Бирмингам, обяснихме им ситуацията веднага бяха алармирани и ни приеха. След 3 дни на изследвания, ни дадоха тежка диагноза болестта на Краб.
Направиха му се допълнителни генетични изследвания, които само потвърдиха страшната присъда. Болест на Krabbe (сфинголипидоза), известна и като глобоидноклетъчна левкодистрофия или галактозилцеремидна липидоза, представлява рядко и често фатално метаболитно заболяване. Тези растройства се развиват при невъзможност на организма да преработи храната и да се извлекат определени хранителни вещества.
За съжаление, при установяване на симптомите на болестта в ранна детска възраст, и след тежка дегенерация заболяването е с фатален край преди 2-годишна възраст.
Все пак надежда има! В момента на Крис му се трансплантират стволови клетки, а това лечение се поема от здравните осигуровки. След това той трябва да бъде изпратен на генна терапия в САЩ, за чието лечение нямаме възможност и се обръщаме към Вас Дарителите. Очакваме оферта от здравното заведение, която ще бъде публикувана тук на страницата му, но сумата ще е приблизително 350,000$.
Тази сума е непосилна за нас и молим за Вашата подкрепа.
Инициатор на кампанията: Елена Георгиева Лазарова (майка)
Бенефициент по кампанията: Христо Лазаров (син)
----------------------------
Hello Angels of hope,
My name is Elena Lazarova I am Hristo's (a.k.a Chris) mummy.
How everything started you would ask?
Few months after Chris's second birthday he started to ask us to carry him around.
We thought that he just wanted more cuddles from us, because nothing before that he had chicken pox.
Apparently what we thought was very much wrong.
Things got even worst when he started to loose his balance and fall.
We were on a holiday in Bulgaria and we thought that it would be a nice idea to have him checked from a GP and Orthopedic. They didn't raise any concerns, they told us that s a temporary phase,most probably because of the chicken pox.
Soon after we came back to Birmingham UK where we live.
Things didn't get better,in a matter of fact they got worst!
Hristo kt falling and loosing balance to the point that one day he fell at nursery and he hit his eye on a wooden toy box.
Immediately we went to the A&E of Birmingham's Children Hosital and explained what was recently happening with Chris.
They were very concerned and admitted us to the Hospital.
After 3 days of numerous tests and MRI,we have been told the differential diagnose of Krabbe's disease.
We were absolutely devastated.
Krabbe (KRAH-buh) disease is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system. In most cases, signs and symptoms of Krabbe disease develop in babies before 6 months of age, and the disease usually results in death by age 2.
However Chris's case was different,the onset of the symptoms was quite late in life, and his was diagnosed with attenuated onset.
There is hope. At the moment we are the Birmingham's Children Hospital and Chris is having stem cell transplantation.
However this is not a cure as there.is no treatment for that devastating disease.
Stem.cell transplantation willingly delay the inevitable, we were told that he will eventually die.
And there's another spec of Hope!
Experimental Gene Therapy.
After Chris's transplantation and his recovery,we will need to go to America and have him evaluated for the possibility of being in that program.
Unfortunately the Gene Therapy is very dear.
Please help us safe our little shinning star Chris.
The price for a gene therapy star's from 350,000 $.
Please help us to have Chris's with us for longer with a better quality of life.
Thank you ever so much
Chris 💙💙💙
Toni and Elena
BG/EN
Hello, dear Donors!
My name is Elena Georgieva Lazarova and I am the mother of little Christo or Chris as we call him in our language.
How did it all start with Chris? - Shortly after his second birthday and after he had a small pox, he started to constantly want us to carry him in our arms. Eventually things got worse - he started refusing to walk and losing his balance. In Bulgaria the GP and orthopaedic surgeon were convinced that everything was fine and it was temporary. We live in England and on our arrival things got scary.
Chris started falling and hitting himself. We took him to the emergency room at Birmingham Children's Hospital, explained the situation to them they were immediately alerted and admitted us. After 3 days of tests, we were given a severe diagnosis of Crabb's disease.
Further genetic tests were done which only confirmed the scary verdict. Krabbe's disease (sphingolipidosis), also known as glomeruloid leukodystrophy or galactosylceramide lipidosis, is a rare and often fatal metabolic disease. These disorders develop when the body is unable to process food and extract certain nutrients.
Unfortunately, when symptoms of the disease are detected in early childhood, and after severe degeneration, the disease is fatal before the age of 2 years.
Still, there is hope! Chris is currently receiving a stem cell transplant, and this treatment is covered by health insurance. He then needs to be sent for gene therapy in the USA, which we are unable to treat and are appealing to you Donors. We are awaiting an offer from the healthcare facility, which will be posted here on their website, but the amount will be approximately $350,000.
This amount is prohibitive for us and we ask for your support.
Elena Georgieva Lazarova (mother)
Campaign beneficiary: Hristo Lazarov (son)
----------------------------
Hello Angels of hope,
My name is Elena Lazarova I am Hristo's (a.k.a Chris) mummy.
How everything started you would ask?
Few months after Chris's second birthday he started to ask us to carry him around.
We thought that he just wanted more cuddles from us, because nothing before that he had chicken pox.
Apparently what we thought was very much wrong.
Things got even worse when he started to lose his balance and fall.
We were on a holiday in Bulgaria and we thought that it would be a nice idea to have him checked from a GP and Orthopedic. They didn't raise any concerns, they told us that s a temporary phase,most probably because of the chicken pox.
Soon after we came back to Birmingham UK where we live.
Things didn't get better,in a matter of fact they got worst!
Hristo kt falling and loosing balance to the point that one day he fell at nursery and he hit his eye on a wooden toy box.
Immediately we went to the A&E of Birmingham's Children Hosital and explained what was recently happening with Chris.
They were very concerned and admitted us to the Hospital.
After 3 days of numerous tests and MRI,we have been told the differential diagnosis of Krabbe's disease.
We were absolutely devastated.
Krabbe (KRAH-buh) disease is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system. In most cases, signs and symptoms of Krabbe disease develop in babies before 6 months of age, and the disease usually results in death by age 2.
However Chris's case was different,the onset of the symptoms was quite late in life, and his was diagnosed with attenuated onset.
There is hope. At the moment we are at Birmingham Children's Hospital and Chris is having a stem cell transplant.
However this is not a cure as there.is no treatment for that devastating disease.
Stem.cell transplant willingly delay the inevitable, we were told that he will eventually die.
And there's another spec of Hope!
Experimental Gene Therapy.
After Chris's transplant and his recovery,we will need to go to America and have him evaluated for the possibility of being in that program.
Unfortunately the Gene Therapy is very expensive.
Please help us safe our little shinning star Chris.
The price for a gene therapy star's from 350,000 $.
Please help us to have Chris with us for longer with a better quality of life.
Thank you ever so much
Chris 💙💙💙
Toni and Elena
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