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Cranberry MOMs (Mothers of Multiples) is hosting this GoFundMe for one of our members, Bethany, and her family.
Bethany and her husband Josh have twin sons Jayden and Josiah.
Jayden and Josiah have been diagnosed with a neurodevelopmental disorder called MECP2 Duplication Syndrome. MECP2 Duplication Syndrome is rare (maybe 6,000 cases worldwide).
No two children experience MECP2 Duplication Syndrome the same way. Jayden and Josiah both have low muscle tone (hypotonia), significant developmental delays, difficulty swallowing, feeding difficulties, and have g-tubes. Josiah also has breathing difficulties and seizures. He has been hospitalized for seizures, pneumonia, as well as respiratory distress caused from a common cold. They both have several specialists, and receive multiple therapies each week.
Half of those affected by MECP2 Duplication Syndrome never walk or talk. Life expectancy is on average 26 years old. Recurrent infections can cause life-threatening complications, and are a major contributing factor for reduced life-expectancy. More information for this diagnosis and its symptoms can be found at:
https://rarediseases.info.nih.gov/diseases/9781/mecp2-duplication-syndrome
https://rarediseases.org/rare-diseases/mecp2-duplication-syndrome/.
Funds raised will help the family with some of their expenses. Some of these expenses include adaptive wheelchair, a larger vehicle to accommodate the boys and their medical equipment, and travel and parking to and from Jayden and Josiah's medical appointments in and out of state.
Battling the insurance company is a part-time job for Bethany and both children will continue to need medical care for their full lives. There is no ‘growing out’ of this syndrome.
Every parent understands the worry when your child is ill or hurt. Some of us have endured our twins, triplets, or quads meeting challenges at the same time. But few of us experience a devastating diagnosis of our children that will likely mean they will never become independent. After all, the unwritten goal of parenting is we raise them to become a viable part of society. Money will not change the effect this syndrome has on Josiah and Jayden. Both boys will be loved unconditionally and cared for to the best of their parents' ability. We are hoping that money will help ease the stress on this family and provide a better quality of life with adaptive items that only money can buy.
People say having twins is a handful. Having twins with special needs and medical equipment is life altering. Please give generously and be thankful for all that you have in your own life.
Thank you for your help supporting this family!
Bethany and her husband Josh have twin sons Jayden and Josiah.
Jayden and Josiah have been diagnosed with a neurodevelopmental disorder called MECP2 Duplication Syndrome. MECP2 Duplication Syndrome is rare (maybe 6,000 cases worldwide).
No two children experience MECP2 Duplication Syndrome the same way. Jayden and Josiah both have low muscle tone (hypotonia), significant developmental delays, difficulty swallowing, feeding difficulties, and have g-tubes. Josiah also has breathing difficulties and seizures. He has been hospitalized for seizures, pneumonia, as well as respiratory distress caused from a common cold. They both have several specialists, and receive multiple therapies each week.
Half of those affected by MECP2 Duplication Syndrome never walk or talk. Life expectancy is on average 26 years old. Recurrent infections can cause life-threatening complications, and are a major contributing factor for reduced life-expectancy. More information for this diagnosis and its symptoms can be found at:
https://rarediseases.info.nih.gov/diseases/9781/mecp2-duplication-syndrome
https://rarediseases.org/rare-diseases/mecp2-duplication-syndrome/.
Funds raised will help the family with some of their expenses. Some of these expenses include adaptive wheelchair, a larger vehicle to accommodate the boys and their medical equipment, and travel and parking to and from Jayden and Josiah's medical appointments in and out of state.
Battling the insurance company is a part-time job for Bethany and both children will continue to need medical care for their full lives. There is no ‘growing out’ of this syndrome.
Every parent understands the worry when your child is ill or hurt. Some of us have endured our twins, triplets, or quads meeting challenges at the same time. But few of us experience a devastating diagnosis of our children that will likely mean they will never become independent. After all, the unwritten goal of parenting is we raise them to become a viable part of society. Money will not change the effect this syndrome has on Josiah and Jayden. Both boys will be loved unconditionally and cared for to the best of their parents' ability. We are hoping that money will help ease the stress on this family and provide a better quality of life with adaptive items that only money can buy.
People say having twins is a handful. Having twins with special needs and medical equipment is life altering. Please give generously and be thankful for all that you have in your own life.
Thank you for your help supporting this family!
Organizer and beneficiary
Bethany Jaworowski
Beneficiary