Fundraising effort underway for treatment of uncommon illness using signed jerseys from Atlético and Cruzeiro football clubs
In a heartwarming display of support, the family of Ayla, a 1-year-and-7-month-old child battling a rare and severe form of Miller-Dieker syndrome, is rallying the community to help raise funds for an experimental treatment in Mexico.
Ayla's mother, Janete Abreu, believes that the Cytroton treatment is Ayla's best chance for a life with better quality. The treatment, an experimental therapeutic approach aimed at addressing the neurological deficits associated with Miller-Dieker syndrome, offers new hope for children like Ayla.
The treatment, while still largely experimental, has shown promising results in preliminary research and early-stage clinical trials. Some case reports and small studies have noted improvements in motor skills, seizure frequency, or developmental milestones after undergoing Cytroton treatment. Researchers view Cytroton as a potential therapy that could augment supportive and symptomatic care, offering hope for better quality of life outcomes.
Each raffle number costs R$ 2.00, and participants can join by clicking on the provided links for Atlético and Cruzeiro jerseys, with a signed Cruzeiro jersey by the team's athletes also being raffled off. For donations, the Bradesco account number is Ag3266CC 0055839-7, with the account holder Janete Gomes Abreu Oliveira. For Pix donations, the number is 71996275552.
The treatment offered in Mexico includes 28 consecutive days of therapies, examinations before and after the process, and covers only 3 cycles of the procedure. Essential medical equipment, travel, accommodation, and food costs during the 30-day treatment stay in Mexico are not included in the fundraising goal. Ayla's family needs to raise R$ 646,000 to initiate the specialized treatment.
Ayla was diagnosed with Miller-Dieker syndrome at 4 months old through an exome exam, a diagnostic tool used for the detection of rare genetic diseases. Ayla started therapies from the first month of her life, showing good results, but still has difficulties holding her head up, producing a lot of saliva, and swallowing, which requires constant aspirations to prevent choking risks.
To follow Ayla's story, visit the Instagram profile @nossa_ayinha. The family is receiving support through therapies and medications, but the fight for Ayla's quality of life has been ongoing since the diagnosis.
While the journey is long and challenging, the hope for a better future for Ayla remains strong. The community's support can make a significant difference in Ayla's life and the lives of many other children battling rare genetic disorders.
- Ayla's battle with Miller-Dieker syndrome, a rare neurological disorder, has inspired her family to rally the community for support in finding an experimental treatment in Mexico.
- The Cytroton treatment, a potential therapeutic approach for neurological deficits associated with Miller-Dieker syndrome, offers new hope for children like Ayla.
- The experimental treatment has shown promising results in preliminary research and early-stage clinical trials, with noted improvements in motor skills, seizure frequency, or developmental milestones after undergoing Cytroton treatment.
- To help raise funds for Ayla's treatment, raffle tickets are available for purchase through provided links for Atlético and Cruzeiro jerseys, with a signed Cruzeiro jersey by the team's athletes also being raffled off.
- The cost to initiate the specialized treatment is R$ 646,000, covering only the treatment in Mexico andexcluding essential medical equipment, travel, accommodation, and food costs during the 30-day treatment stay.
- Ayla was diagnosed with Miller-Dieker syndrome at 4 months old through an exome exam, a diagnostic tool used for the detection of rare genetic diseases.
- Despite the challenges, Ayla continues to show improvement through therapies from the first month of her life, but still struggles with difficulties such as holding her head up, excessive saliva production, and swallowing.
- To stay updated on Ayla's journey, follow her Instagram profile @nossa_ayinha, as the family continues to fight for her quality of life and hopes for a future free from the constraints of rare genetic disorders.
