Growing Up in Wartime Ukraine With a Rare Condition

As residents of Ukraine’s cities brace for another winter of air attacks, potentially requiring them to hunker down in freezing homes and shelters, many parents are equally worried about their children’s access to hard-to-get medicines for rare diseases.

For almost 12 years, Alyona Smityukh and her husband have dedicated all available resources to treating their son Sasha’s diagnosed pituitary dwarfism, paying thousands of dollars out of pocket for foreign-made medicines.

“The war is currently having a significant impact on our family’s financial situation, especially with regard to our son’s essential treatment,” said Smityukh. “It is difficult, very difficult, but giving up will not make it any easier, and we understand that.”

However, the past year brought a double breakthrough for the family and many like them: A free initial four-month supply of growth hormone medication donated through Direct Relief; and a resultant growth spurt in Sasha, now 16, that brought him almost equal to his peers in height. Other parents also reported solid and even exceptional gains.

“My son has been injecting it for 2 months and grew 1.5 cm – after no growth at all in the preceding three months [using a different drug],” one mother wrote in a parents’ chat group. Another said her daughter grew 2 cm in two months: “She didn’t grow like this with any other drug.”

A further delivery of thousands of boxes of growth hormone will shortly be distributed among families in need through clinics in Kyiv and Dnipro. The treatments contain somatropin, a man-made version of human growth hormone that replaces or supplements the body’s natural hormone, stimulating growth, cell reproduction, and metabolism.

Not a day too soon, say doctors, following the recent missile and drone strikes on medicine warehouses of the country’s largest pharmaceutical companies and the World Health Organization. Amid this threat, the new shipment, stored in less conspicuous premises, will help get families through the winter months.

“It is crucial that our patients receive [this] high-quality, effective medicine for a 3- to 4-month course of treatment free of charge,” said Dr. Olha Vishnevska of Kyiv’s Institute of Endocrinology. “This is particularly important at the moment due to certain disruptions to the supply of medicines.”

No Time to Lose

Timely diagnosis is essential for pituitary dwarfism and other conditions that impair growth. In Sasha’s case, doctors missed this for several years of his early childhood – when every day is vital for taking corrective action.

“When my son turned one, I began to notice that he was developing very slowly physically, but the doctors assured me that everything was fine, because genetically he couldn’t be big, since I am petite and not very tall – only 160 cm,” said Smityukh.

“The doctors didn’t panic until Sasha was five years old, [when] there was already a significant difference between him and his peers. He was about 20 cm shorter, and then Sasha’s linear growth gradually slowed down and stopped.”

A full hormonal examination followed, including an MRI of the brain – specifically the pituitary gland, an X-ray of the boy’s hands to determine bone age, an ultrasound of his internal organs, and other examinations before his mother’s worst fear was confirmed: Sasha has pituitary dwarfism, a rare disease that cannot be prevented but can be corrected with medication and requires long-term therapy with artificial growth hormone.

“‌It was a shock for me, and I found out when I was six months pregnant with Diana, Sasha’s sister,” said Smityukh. “There were many tears, and it was very difficult to know what would happen next, but thank God, my daughter survived my worries in my belly and was born healthy.”

Supporting Children in a Critical Growth Window

Then came the challenge of making up for lost time in treating Sasha, one of around 900 children in Ukraine who have this and other severe growth conditions that require this medication, according to Vishnevska.

“All of our family’s resources are focused on treating our son, because we understand that time is of the essence,” said Smityukh, noting the looming end of the growth period in boys at around 18, when the growth plates in the bones close.

Since 2015, Sasha’s parents have paid for an analog, which has cost progressively more as he grew. Given his current height and mass, this comes to more than $11,000 per year in the absence of any support.

Today, he is making good progress, due in part to the donated growth hormone supplied by Direct Relief through its local partner Charity Fund Modern Town and Village, gaining 0.5 cm in just two months after starting daily injections a year ago.

Direct Relief previously supplied the drug through partners in the cities of Kharkiv, Poltava, Dnipro, and Zhytomyr. However, tracking the progress of patients is not always easy for various reasons, said Vishnevska, who oversees the program. “We accept children from all over Ukraine, not just Kyiv. New ones appear, some grow up, some no longer need such therapy. Plus, let’s not forget that there is a war going on, and children are moving away with their parents.”

Several parents contacted by Smityukh also reported growth of at least 0.5 cm in their children in the first two months of the previous treatment. Although Sasha’s weight is still below average for his age, he reached 169 cm in height by the end of September, said his mother, overjoyed that she now literally looks up to her son after so much heartache and struggle.

Amid the losses and deprivations of more than 4 1/2 years of war, these results are landmark victories in themselves, nurturing great hope for the future.

“This support came at a very important time,” said Marina Makarenko, director of Charity Fund Modern Town and Village, which delivered the medicine to the Kyiv institute and to several regions of Ukraine. “Thanks [to the donation], these children now have a real chance to grow, develop, and live healthy lives.”