A three-year-old child named Mathilda appears to have a unique genetic disorder, sending shockwaves.
In Dusseldorf, a family is seeking support for an innovative treatment approach for their 1.5-year-old daughter, Mathilda, who was diagnosed with Rett Syndrome. The rare genetic disorder, which affects girls more commonly than Down Syndrome in Germany after it, has left Mathilda with severe physical disabilities and communication challenges.
Christina Freda and Markus Briese are considering dolphin therapy to help improve Mathilda's communication and motor skills. However, the estimated cost of 16,500 euros for the therapy is not covered by their health insurance, making it a significant financial burden for the family.
The high cost of Rett Syndrome therapy is due to the complexity and rarity of the disorder, which often requires multidisciplinary care including medical treatment, physiotherapy, occupational therapy, speech therapy, and sometimes advanced interventions such as gene or drug therapies currently under research. In Germany, these treatments can be quite expensive, with exact cost figures specific to the country not readily available.
Fortunately, there are funding options available to families dealing with Rett Syndrome in Germany. Patients typically rely on coverage from statutory health insurance, which covers medically necessary therapies and treatments. Additionally, social support benefits through German social welfare programs can be accessed to support families dealing with disabilities and chronic conditions.
For novel treatments such as gene therapies or repurposed drugs, funding may require special reimbursement schemes or participation in clinical trials until approvals and inclusion into standard care are granted. Specialized foundations and advocacy organizations in Germany can also help families find financial aid, guidance on insurance coverage, and sometimes direct assistance for therapy costs.
Emerging advanced therapies, such as the AI-discovered vorinostat formulation or intravenous gene therapies, are promising but currently experimental and typically accessed through clinical trials or special compassionate use programs. Once approved, Germany’s healthcare system and statutory insurances usually evaluate cost-effectiveness and negotiate pricing and reimbursement.
The family has started a fundraising campaign on the "gofundme" platform to cover the cost of the dolphin therapy. In less than four weeks, half of the required amount has already been collected. If more money than the required 16,500 euros is collected, it would help the family in the future.
The family is also looking into other options to support Mathilda's development, such as teaching her a few steps with a gait trainer and acquiring a wheelchair-accessible car, which costs up to 70,000 euros, with the health insurance only subsidizing 4,000 euros.
Mathilda was born a healthy child, and her parents were devastated when she suddenly could no longer hold her bottle or crawl. Symptoms of Rett Syndrome include epileptic seizures, loss of language, scoliosis, spasticity, movement disorders, sleep disorders, and swallowing difficulties.
Currently, about 5,000 girls and women with Rett Syndrome live in Germany, with approximately 50 children affected by the disorder each year. Families who have gone through similar experiences have recommended dolphin therapy to the Dusseldorf couple.
For the most accurate and personalized information, families in Germany should consult with healthcare providers, insurance companies, and Rett Syndrome support organizations, which can assist in navigating therapy funding options. Those who wish to support the fundraising campaign for Mathilda can do so online via the "gofundme" platform.
- The family in Dusseldorf is exploring an innovative approach of dolphin therapy for their daughter Mathilda, who has Rett Syndrome, a rare genetic disorder that leaves children with severe physical disabilities and communication challenges.
- In addition to dolphin therapy, the complexity of Rett Syndrome requires a multidisciplinary approach that includes medical treatment, physiotherapy, occupational therapy, speech therapy, and advanced interventions such as gene or drug therapies.
- Funding options for families affected by Rett Syndrome in Germany include coverage from statutory health insurance and social support benefits through German social welfare programs.
- For novel treatments like gene therapies or repurposed drugs, families may need to participate in clinical trials or access special reimbursement schemes until approvals are granted.
- Specialized foundations and advocacy organizations in Germany can help families find financial aid, guidance on insurance coverage, and sometimes direct assistance for therapy costs.
- As the family tries to cover the cost of dolphin therapy through crowdfunding, they are also considering additional expenses such as a gait trainer, wheelchair-accessible car, and half of the required amount has already been collected.
