A community unites to support Maya.
The entire town of Völklingen-Lauterbach turned out to a local event on 1 June 2019. It was sunny day and the local associations were entertaining everyone with great music, food, a tombola and lots of other activities. The day itself was a happy occasion, yet the circumstances surrounding it are rather sad. It was a large-scale charity event organised by the local fire brigade to support 13 year old Maya. People who meet Maya – a cheerful and vivacious young girl – may find it difficult to believe that she suffers from NBIA (neurodegeneration with brain iron accumulation), a rare group of disorders characterised by an abnormal accumulation of iron in the brain. Maya has MPAN (mitochondrial membrane protein-associated neurodegeneration), one of the four most frequent forms of NBIA. MPAN is a neurodegenerative disorder caused by a genetic defect that causes a loss of nerve cells. It affects 1 to 3 people in every 1 million. No effective medication has been developed to treat it yet because the research process is painstaking and cost intensive. And because NBIA and MPAN are so rare, there is little support from the pharmaceutical industry and therefore a lack of funding to drive progress. That’s why Maya’s family, friends and supporters decided to take matters into their own hands. Time is against Maya. As the disease progresses she will experience increasingly severe seizures, spasms, motion disorders, parkinsonism, speech impairments, blindness, mental deterioration and extreme psychiatric symptoms, as well as incontinence. Ultimately, she faces an early death.
Family, friends and supporters spring into action.
The event in Maya‘s home town of Lauterbach is just one of a series of activities that Maya’s family and friends have organised to raise money for the Hoffnungsbaum (Hope Tree) organisation. A total of EUR 19,012 was raised in Lauterbach. Hoffnungsbaum (www.hoffnungsbaum.de) is a non-profit patient organisation supporting NBIA research and treatment. It is helping Maya and other NBIA sufferers to raise awareness for their disorder and promote research into it. NBIA can affect any child. When our employee Jürgen Kipp, who lives in the town next to Maya‘s, heard about her plight he asked his colleagues if they had any ideas on how to help her. Melanie Faehte had a very simple but effective one. After the most recent trade fair she sold Kömmerling demo windows and donated the proceeds to the Hoffnungsbaum organisation that Maya and her parents support. Melanie and Jürgen raised EUR 1,600 for Hoffnungsbaum and Maya with their spontaneous window sale. The Saarbrücker Zeitung newspaper reported that more than EUR 90,000 has been raised to date for research at various fund-raising activities in Saarland – an impressive amount but not enough to beat NBIA. “We have to keep up the fund-raising activities so that, one day, the researchers will find a cure for NBIA,” said Maya’s parents, Sebastian and Stephanie Matthiesen.
Your window to a better world. Melanie Faehte and Jürgen Kipp spontaneously decided to sell the demo windows at a trade fair and donated the proceeds to the Hoffnungsbaum organisation.
A diagnosis of NBIA and Maya’s courage to go public.
Maya and her family’s world fell apart on 24 September 2018, the day Maya was diagnosed with MPAN. But instead of losing hope they began to fight for awareness and raise money to fund research. They began to fight for Maya’s life. Maya and her parents provide some very candid insights into living with the disorder and tell Maya’s personal story on the website www.helft-maya.de. They hope to raise awareness and support for this little-known disorder. Maya has given NBIA and MPAN a face. On her website she describes the burdens she faced as a result of the doctors taking so long to diagnose this rare disorder. She had been blaming herself for being unsteady on her feet and having speech problems, despite all her efforts to walk and talk properly. Maya was ridiculed, insulted and bullied until she finally discovered what was wrong with her. She says she wished she had known much earlier that her deficits weren’t her fault because other people might have been more understanding towards her. That’s why Maya is so determined to raise awareness for NBIA and MPAN.