Adelina is very calm and affectionate. It grows like a normal child, except for a gap in the spine. Spina bifida prevents the leg Adeline to develop normally. You need to remove the hernia, she was able to walk. But the operation fee, treatment costs half a million rubles. Mom Aijamal now a single mother of three children, they live in Kyrgyzstan. Father left the family due to the birth of a sick child. When Aijamal goes with Adelina to Moscow for examination, older brother and sister are staying with grandma. Adelina’s family will not be able to collect such huge amounts of money without our help.
Turdukulova Adeline. Photo: Anastasia Demyanova
- Hemophilia, cancer, and there is no bottom to this horror
- A “hole” in the heart of the operation at the expense of the parents
- “He was lying on my shoulder, like a whip, and didn’t even cry”
- 9 years Bob went into convulsions of epilepsy every day
- “He only reacts to pain.” in 5 years, Adam is not sitting, not walking, not talking
Adelina hugs mom’s neck and cries with her
Little Adeline and a half years. While Adelina did not know more than five words, three of them Kyrgyz: “ATA” (mother) “APA” (Papa), “ene” (grandmother). She happily repeats the child’s “yum-yum” and understands when the mother in Russian it says: “can’t go out, can not touch!” Not so you can not. Obedient ADI carefully closes the Cabinet door in a rented apartment and then looking for what else you can do, where to crawl, what to take. See your favorite piece and bring a smile: here is what you can do!.. And deftly puts the rings on each other.
Adelina mom and Eigamal. Photo: Anastasia Demyanova
“ADI is my younger daughter, says Aijamal. The name gave her older sister Ikoko”. Ikoko for 9 years. She goes to school, and still plays on Kyrgyz musical instrument called komuz. Close friend Ikoko, also called Adeline, moved to another city.
“My daughter was sad and she offered to call her younger sister that name – says Aijamal. My Adeline is a very quiet girl. Sleep well at night, eats well. I feed her at my breast, but sometimes I give yoghurts and fruit. Adeline loves bananas. Still loves when I sing her the song “Owl-owl – big head”. ADI begins to flap her arms, showing how to fly the owl. Loves to play hide and seek, closing palms face. And yet she clings to the table and trying to stand up. But then he realizes something. And gets back”.
To stand straight on two legs Adelina can’t, because the left leg is half an inch shorter than the right. She does not understand yet. Doesn’t know the meaning of tricky words “spina bifida occulta” my mother heard from doctors after her birth. Not angry at dad, who disappeared after six months, telling everyone: “I Have a daughter-the invalid”.
Photo: Anastasia Demyanova
She only gets scared when mom suddenly starts to cry. Adelina at such moments, hugs mom’s neck and weeping with her. “When I heard the diagnosis, I was in shock, says Aijamal. I didn’t know what it is. The doctors explained but I do not understand… During pregnancy I was often ill. I was told that the illness of the daughter, perhaps due to my colds. Now ADI on the back below the belt like a lump. If I make her a massage, she’s crying”.
Photo: Anastasia Demyanova
The only solution is surgery
“Bump”, as he calls her Aijamal, or spina bifida occulta is a hidden spina bifida, as the spinal cord and nerve roots is normal, and no large defect in the back. This form of spina bifida characterized by a small defect (“bump”) or a crack in the vertebrae that form the spinal column. In the case of the defect Adeline blocked the blood flow to his left leg, resulting in leg slowed his development.
Perhaps the cause of genetics. Perhaps, the influence of external factors. For example, during pregnancy, not enough folic acid (legumes, leafy vegetables, and fruits). It is believed that spina bifida often are born girls. This diagnosis occurs in one to two babies out of a thousand.
Photo: Anastasia Demyanova
Patients with spina bifida are faced with such problems as urinary incontinence and fecal incontinence, disturbance of innervation of the lower limbs, leading to loss of pain and temperature sensitivity, paresis and paralysis, spinal curvature of various degrees, causing various dysfunctions of the musculoskeletal apparatus.
The only way for such a patient is surgery. Now even spina bifida surgery in utero, and, according to world statistics, the operation is tolerated by patients better than postnatal.
In the case of Adelina’s diagnosis became known only after birth, but now surgery is required, as “gap” in the spine, girls can be closed only by surgery.
Dream that my daughter went, like all the other kids
“I am very concerned about the health of his daughter, but the doctors give a good prognosis. I was told after surgery Adelina will be able to walk. Will only need to wear orthopedic shoes, says Aijamal. – By profession I am a seamstress and I wish I ever had my sewing shop. But now I have only one dream – that my daughter went to, as all the other children!”
Photo: Anastasia Demyanova
Surgery on the spine with the installation of metal structures, inhalation anesthesia, spiral CT of spine MRI of the spine, the daily observation in the intensive care unit and intensive care – all you need is a 504 350 rubles.
Such money from Eigamal and her family there. But from your own, even small, donations may be huge amount. Let’s help little ADI to learn how to walk without pain. And these two Latin words spina bifida were not for her a life sentence.
Go to the page collection at the Foundation’s website