Premature-born Leontýnka fought for her life, Lilly longs to live like her peers. Both were helped by generous donors
Prematurely born Leontýnka and sixteen-year-old Lilly received medical devices thanks to generous donors and the Our Lungs Foundation Fund, which will make their daily lives easier. For Lilly, the oxygen concentrator will bring more freedom, allowing her to venture outside the home and experience adolescence similarly to her peers. Leontýnka will be helped by a small "guardian" in the form of a special sock – an oxygen monitor that tracks heart rate and blood oxygen levels and will make daily care easier for her mother.
Leontýnka weighed only 420 grams at birth
Leontýnka came into the world extremely prematurely, at 23+2 weeks of pregnancy, with a birth weight of only 420 grams. Because she was born very early, her lungs did not have time to develop properly – the result is bronchopulmonary dysplasia.
She needs oxygen support and her health condition must be carefully monitored. This is where a little "guardian" in the form of a special sock will now help the family. The oxygen monitor can continuously track Leontýnka's heart rate and blood oxygen level. It will bring her family greater peace of mind and make daily care easier for her mother.
"That monitor will really help me with that inner peace, that if by chance something should start happening, it will alert me before I, as a non-medical professional, just a mom, would notice it. So actually I'll have room in my head for what the older one needs, for school and activities, that I simply won't have my head full only of the fact that something could happen to the little one and that I wouldn't notice it,"
says Leontýnka's mother.
Lilly will be able to live like her peers
Sixteen-year-old Lilly has been struggling with her health since she was a baby, but the turning point came approximately two years ago when she started to suffer from an unusual cough. Examinations eventually revealed a rare mutation of the FLNA gene and a severe chronic lung disease. Today, Lilly is dependent on long-term oxygen therapy, which significantly interferes with her normal functioning.
"Lilly has been sick since the first months after she was born, but we first noticed about two years ago when she started having an abnormal cough. So she had an MRI scan done and that's when it was revealed,"
explains Lilly's mum.
While for most teenagers it's a matter of course to go out, visit family or go on holiday, for Lilly every such plan means primarily solving the issue of having enough oxygen.
But that will change with the oxygen concentrator that the Our Lungs Foundation Fund has given to the family. The device will bring her greater freedom and mobility and allow her to spend more time away from home. Lilly will be able to visit her loved ones more easily, travel with her family or go on holiday and experience adolescence similarly to her peers.
When we asked Lilly and her mum what first shared experience they would like to treat themselves to thanks to the new device, the answer came immediately and with enthusiasm: "First we'll go to grandma's. This weekend already."
Donors helped two young patients
Behind both devices also stands the solidarity of people who decided to contribute to the collection for these medical devices. Their help this time turned into two specific medical aids for two girls at completely different stages of life.
When we asked Lilly's mum whether she expected the help to be secured so quickly, she answered as follows: "Absolutely not. We were amazed and I would like to tell you that we thank you so very much. We appreciate it greatly."
"I am incredibly grateful to all the people who support these premature miracles, because it really is such a treasure that fought for its life in this world,"
thanked Leontýnka's mum.
Leontýnka could not attend the ceremonial presentation for health reasons
Although the oxygen monitor for Leontýnka had already been secured, neither she nor her mother could attend the ceremonial handover in person. The family is still waiting for a device from the health insurance company that would allow Leontýnka to safely leave home even at times when she has low oxygen saturation in her blood.
Given her health condition, it was therefore not possible to risk the journey to the ceremonial handover. The special oxygen monitor in the form of a sock, which the Our Lungs Foundation Fund secured for Leontýnka, will be handed over to her at a later date.
The Our Lungs Foundation Fund helps where standard care is not enough
The Our Lungs Foundation Fund focuses on supporting pediatric patients with respiratory diseases. It also helps at healthcare facilities where medical equipment is not always available in sufficient quantities.
During its operation, the fund has managed to collect more than 1.2 million crowns to help those in need.
"By the end of this year, we are planning another fundraising campaign, but if you know of any other uninsured case, don't hesitate to contact us and we will be happy to help, and please stay with us, we will help together," said Elena Jakubovič, founder of the Our Lungs Foundation Fund
Source: author's text, own survey, editorial staff
