Help Jeanette Get Treatment
Donation protected
Jeanette is a high spirited bubbly 3 year old little girl who loves all things Disney Jr & Nick Jr related. Recently she began struggling getting out of bed, and walking across the room. It was then that my brother and my sister-in-law began taking her from one doctor to the next seeking answers. It was a long battle, because at first the doctors could not figure out why she was losing function in her legs.
Finally after extensive test, and a ctscan, she was diagnosed with Metachromatic leukodystraphy.
MLD is short for metachromatic leukodystrophy. Translated from doctor talk MLD means: meta - change, chromatic - color, leuko - white matter, dystrophy - degeneration. MLD's name therefore comes from degeneration in the white matter of the brain and Central Nervous System (CNS) which has a color on staining that should not be there. Staining was how the disease was observed before the advent of the MRI.
Basically people who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and CNS causing destruction of the myelin sheath, or demyelination. Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain. This loss of or miscommunication accounts for the loss of acquired functions, paralysis, blindness, seizures and eventual death seen in MLD.
Therapies & Research
At this time there is no cure for MLD. The only treatment is bone marrow transplant (BMT) or stem cell transplant (SCT), and they are most effective in slowing the disease in people who are not showing any significant symptoms of MLD (pre-symptomatic). Research is making strides towards in the areas of improved bone marrow transplants, enzyme replacement therapy, gene therapy, and cell line studies.
At this time a hospital in North Carolina is willing to treat her, but they can't move until insurance or some type of payment is figured out. Jeanette has been turned down for emergency medicaid and disability benefits, so mom & dad are at their wits end trying to get her the treatment that she needs.
Please support the King family & our beloved Jeanette. Even a single dollar bill can go a long way. Thank you in advance for your love and support during this difficult time.
Tiffany
Finally after extensive test, and a ctscan, she was diagnosed with Metachromatic leukodystraphy.
MLD is short for metachromatic leukodystrophy. Translated from doctor talk MLD means: meta - change, chromatic - color, leuko - white matter, dystrophy - degeneration. MLD's name therefore comes from degeneration in the white matter of the brain and Central Nervous System (CNS) which has a color on staining that should not be there. Staining was how the disease was observed before the advent of the MRI.
Basically people who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and CNS causing destruction of the myelin sheath, or demyelination. Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain. This loss of or miscommunication accounts for the loss of acquired functions, paralysis, blindness, seizures and eventual death seen in MLD.
Therapies & Research
At this time there is no cure for MLD. The only treatment is bone marrow transplant (BMT) or stem cell transplant (SCT), and they are most effective in slowing the disease in people who are not showing any significant symptoms of MLD (pre-symptomatic). Research is making strides towards in the areas of improved bone marrow transplants, enzyme replacement therapy, gene therapy, and cell line studies.
At this time a hospital in North Carolina is willing to treat her, but they can't move until insurance or some type of payment is figured out. Jeanette has been turned down for emergency medicaid and disability benefits, so mom & dad are at their wits end trying to get her the treatment that she needs.
Please support the King family & our beloved Jeanette. Even a single dollar bill can go a long way. Thank you in advance for your love and support during this difficult time.
Tiffany
Organizer and beneficiary
Tiffany King
Organizer
New York, NY
Dubri King
Beneficiary
