05.06.2019

Alisa needs help again…

This year Alisochka has to have two operations. The first — decompression of the posterior cranial fossa, the second — reconstruction of the spine.

In 2017, in the opinion of neurosurgeons in Ukraine and Spain, Alisa needed an operation.

In 2018 Alisochka and I were at the Istanbul clinic "Memorial", at an in-person consultation with Professor Gokhan Akdemir. The professor did not agree with the opinion of his colleagues. Having looked at the scans, he pointed out that Alisa's Arnold-Chiari syndrome had not been progressing since 2013.

Gokhan Akdemir did not recommend the operation. The professor proposed working on the child's rehabilitation.

All through 2018 and part of 2019 we worked on rehabilitation and on new examinations. Alisa was taught individually at school. She went through three courses of rehabilitation at the clinic of Ye. V. Yatsenko.

We noticed a positive change in our daughter after the very first course of rehabilitation. Alisa's sleep and speech improved, and the savage headaches went away.

But, unfortunately, Alisa's scoliosis is progressing rapidly.

In 2019 we underwent numerous spinal examinations: CT scans, MRIs, and renographies.

We consulted with many neurosurgeons, spinal surgeons, and orthopedists across our country. Our specialists believe Alisa needs spinal surgery this year, as the angle is critical.

We attended hundreds of consultations, but were always told they couldn't help us because our child had comorbidities.

But we didn't despair and continued to fight for our girl.

We sent all medical documents and images to clinics in Turkey, Russia, Spain, the Czech Republic, Italy, America, Israel, and Germany.

It was a very long journey. A journey to clarity and consistency in our situation. A journey to help a child who suffers so much, who has become accustomed to his pain, who is living and thriving.

20 May 2019 we received a response from the German clinic "Helioz". This is one of the leading clinics specializing in pediatric neurosurgery and orthopedics.

According to German neurosurgeons, spinal surgeons, and orthopedists, Alisa primarily needs posterior fossa decompression surgery, followed by spinal reconstruction.

We have very little time. Two surgeries need to be performed this year.

This is an unrealistic amount for us. We appeal to all caring people with a huge request to help our family, to give Alisa the opportunity to be like everyone else. To go to school, to the theater, to the cinema, to make friends, to relax at the seaside... Our daughter is deprived of all this.

We sincerely hope for your help!

Your kindness will return to you, to your families, multiplied a hundredfold!

Please give Alisa a CHANCE to live a full life!

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Hello! We, a family of displaced persons from Donbas, in 2014 the year, in due to the beginning of hostilities, moved to Cherkasy, where we live. Our daughter, Alisa Isaeva, born in 2011  , suffers from multiple ailments, including a rare disorder, — Arnold-Chiari syndrome, which our specialists diagnosed back in 2013, but assured us that there was no urgency in surgery. However, MRI scans of the brain and spinal cord, performed in June and August of this year, showed otherwise. In between 2014 and 2017  my daughter began having trouble walking. In she now walks only with support. And we took the wrong path, focusing all our efforts on orthopedics, not knowing that we were treating a symptom, and the cause was Arnold-Chiari syndrome. Time was wasted. At the Romodanov Institute of Neurosurgery, we were offered a  posterior fossa decompression surgery, but such surgeries are extremely traumatic and ineffective (until 50% relapses). Considering that my daughter, at three months of age, underwent surgery for craniosynostosis, which severed two of the three cranial sutures, there is a huge risk in performing such a conservative surgical intervention.

But there is another way to resolve our problem — this is sectioning the filum terminale. Since such surgeries are not performed in our country, we  sent all the documents to the  Chiari Institute (Barcelona, which has been a leader in the 40  world for over years in the specialized study and treatment of this particular anomaly. A response came back from there with recommendations to perform the surgery as soon as possible, since, according to Spanish specialists, the disease is progressing. Along with this response, a separate estimate was sent. The cost was — 18 800 euro.

Over these years, with a sick child on our hands and having moved to a strange city, we spent all our savings and are not able to pay this bill. Therefore, we are now appealing to all caring people with a huge request — to help our family get our little one back on her feet in the truest sense of the word. Our girl is very strong. During her life, she has endured four comas, two neurosurgeries, and six hospitalizations in intensive care, which is confirmed by the relevant documents. But now Barcelona is giving her a chance to save her life.

See ways to help here.