Make a gift in honor of Zinet and Assen today!
We are Rosen and Rayme Mihaylova, parents to Zinet (10 year old girl) and Assen (8 year old boy). At home we speak in Turkish, English and Bulgarian. Zinet and Assen understand most of what we say in these three languages — even if they don’t talk, they understand everything.
They both bum shuffle on the floor and point to what they want. If they want a drink they will point at their mouth for drink or food. They love snacking most of the time! We always make homemade food for them. The whole family cooks for them – Mom, Dad, Grandad, and Nan. Neither of them can chew properly and cannot eat on their own, but they can pick up crisps and eat snacks.
They are both very happy children and have very similar personalities. When one cries, the other one starts crying too. They care for each other. They both enjoy swimming, going to the park or for an adventure, music, and pretending to sing (especially Assen).
They need 24-hour care every day. We have taken Zinet and Assen to a few countries for physiotherapy and treatments (Poland, Bulgaria, India, and Turkey) just so we could find the right one for both of them. We started giving them homeopathic herbal remedies for 6 months prior to 2019, thinking that they had cerebral palsy. In April of 2019 we got our genetic results back after waiting for them for 3 years or more. The results showed that that they have ML4, a very rare genetic condition. We were told that only about 80 people have it in the world. We were shocked at this diagnosis, after having believed that they had cerebral palsy for so many years.
Doctors explained to us how ML4 affects young people as they get older, including difficulties with walking and movement, loss of vision, and a limited lifespan. This was not good news, so the whole family went through a lot that year. We can’t describe in words but can describe in tears. At that time, Rayme’s sister found The ML4 Foundation in the United States, which gave me hope. This organization helped fund the discovery of the ML4 (Mucolipidosis Type IV) gene, and they are now working with scientists to find a gene therapy treatment. We are fundraising for The ML4 Foundation to help them to help our children and other children out there that don’t deserve the difficult effects of this disease. We don’t find it a burden to care for our children, but when we see how hard everything is for them, it is challenging for all the family. We have concerns about them losing abilities as they get older, and our biggest hope is just to see them walk and talk.
ABOUT THE ML4 FOUNDATION
ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.
The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!
If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Zinet and Assen.
Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309
The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501