Vanessa is not even 14 years old yet and she is already battling the rare muscle-wasting disease SMA. She is fully dependent on the help of her parents and medical devices. She needs not only a cough assistant, but also a suction machine and a portable oxygen concentrator to enable her to travel to her grandparents. Join us and help Vanessa on her journey to find her second breath!
Vanessa comes from Uherské Hradiště, she was born in 2009 into a big family with many siblings. Vanessa and the whole family were very affected by her diagnosis of SMA, a congenital disease that affects conscious muscle movements. But there is nothing in the world that could steal the smile off Vanessa's face.
With her mom caring for her alone every day, she loves to create, paint, or spend long moments in the kitchen cooking and baking. She also enjoys traveling to see her grandparents, although her illness doesn't make it any easier.
"If I could, I would give her my lungs," says Vanessa's mom.
Daddy works as a soldier, serving his country, older sister works as a teaching assistant. My brother likes to fish. Still, they all take turns in caring for Vanessa to give Mom a break from time to time, perhaps to care for the extensive collection of angel statues she started when her disabled daughter was born in her older age. Vanesska also enjoys travelling to visit her grandparents, although her illness doesn't make it any easier.
"We would be very grateful if you could support our patients and their parents. In particular Vanessa, who is very active, enthusiastic, wants to experience a lot of positive things and has an admirable family." Said the vice-president of SMÁci Mgr. Helena Kočová, Ph.D.
Founded by Y&T Luxury Property, an all-female real estate firm, that covers all operating costs of the Our Lungs Foundation, the Our Lungs Foundation supports the prevention, early diagnosis and treatment of lung disease, including lung cancer and the effects of COVID-19. Our mission is for everyone to enjoy life to the fullest! Let's donate to Vanessa.
What are we raising money for and why?
Vanesska, like every other child, deserves the best possible life full of love, experiences and adventures. But she hasn't had much luck in her life so far, apart from a loving family. Let's work together to give it to her.
The oxygen concentrator, the suction machine, the cough assistant, as well as the rehabilitation equipment are all expensive medical devices that the family cannot afford as a regular expense. While insurance only covers the bare necessities, the family needs much more.
"Often we don't get to see my grandmother at all, we have to go straight back home because Vanessa can't catch her breath in the back seat... it breaks my heart." - Vanessa's mom
What Vanesska wants most is a portable oxygen concentrator for 60 000 CZK. She herself is on pulmonary ventilation and travelling to see her beloved grandmother is too difficult for her. A portable oxygen tank would allow her to travel to see her grandparents more often and comfortably without losing her breath. But then a high-quality suction machine costing 25,000 CZK is essential for Vanessa's care. And finally a cough assistant for 127,000 CZK.
What is SMA?
The disease SMA, or spinal muscular atrophy, affects approximately 1 in 6,000 babies born. The disease is congenital, as it is caused by a mutation in a gene called SMN during the child's development. As a result, patients experience muscle wasting and limited mobility. SMA has four types, which differ in the severity of the disease and the extent of the disability, and the age at which the patient was diagnosed.
"Give Vanessa a second breath!" - Chairman of SMÁci Ing. Václav Hradilek
Until recently, the disease was incurable, treated only symptomatically. In 2017, a drug that treats SMA was introduced to the Czech Republic. It is a one-time infusion of a gene to a patient under two years of age. The drug, which costs over 50 million crowns, is the most expensive in the history of medicine. In the Czech Republic, specifically in Motol in Prague, it has so far been injected only to thirty patients.
There's that cough again!
A cough assistant is a non-invasive medical device that helps patients cough. It stimulates expectoration by rapid changes in pressure. Patients usually use the device on a daily basis also because by ridding the lungs of mucus, the lungs are also cleansed of bacteria and viruses. The "cough assit" thus becomes an indispensable and very important part of the life of patients with muscular disabilities.
PŘEDÁNO! VANESSKA DOSTALA NOVÉ PŘÍSTROJE 🧡💨 Slavnostní předání tří přístrojů pro Vanessku, která trpí závažným onemocněním SMA, proběhlo v pondělí 28. srpna. Nadační fond Naše plíce předal za pomoci herečky a moderátorky Adély Gondíkové mamince Vanessky kašlacího asistenta, kyslíkový kancentrátor a odsávačku. Přístroje v celkové hodnotě 210 710 Kč ulehčí Vanessce a její celé rodině život. 😍 Vanesska tak díky novému vybavení získala druhý dech. 🍀 Děkujeme všem dárcům kteří přispěli. Velké díky patří také realitní kanceláři Y&T Luxury Property, která přispěla polovinou z celkové výše daru.
Jak předání probíhalo si můžete přečíst zde. Nebo mrkněte na reportáž z předání 🧡.
Jak vypadají přístroje pro Vanessku v hodnotě 210 710 Kč na které jsme se skládali? 1. KYSLÍKOVÝ KONCENTRÁTOR 2. ODSÁVAČKA 3. KAŠLACÍ ASISTENT
Srpen je měsícem SMA. Děkujeme všem dárcům za podporu Vanessky. Zbývá vybrat 15 501 Kč. Více o nemoci si můžete přečíst zde.
WE'VE CROSSED 100,000! 🥳 Thanks to all donors for contributing!
Thank you to our donors for their trust! All the funds raised will be used to purchase necessary medical supplies for Vanessa! 🤗❤️