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HELP! WE HAVE EXPERIENCED A MIRACLE.....
and her her name is Mollie Faith. Mollie was born December 22nd, 2005. She was born with Trisomy 13, a chromosonal defect that causes multiple anomalies. these babies often die at birth, less than 1% live to be a year old. There are about 100 children/adults with trisomy 13 known to be alive worldwide.
Trisomy 13 was not Mollie's only challenge at birth. Her mother felt unable to care for her due to her diagnosis and poor prognosis. Finding a foster home for an infant with a grave prognosis is difficult at best.
My husband and I had fostered for 20 years. During that time we had 30 special needs infants come through our home (I am a nurse with a newborn intensive care background). The agency called early January 2006. They told us of a 2 week old baby girl who was being discharged to Hospice Care, life expectancy likely less than 3 months. I knew little about Trisomy 13 but quickly educated myself. What I learned was grim. My husband and I talked, we both agreed that we didn't want her to die without a family. We brought her home the next day to hold her and love her as long as we could. Day after day night after night we watched over her, expecting her to leave us at any minute, but there was a different plan for Mollie. There were many struggles during her first few months, a severe swallowing disorder made feeding and gaining weight really difficult. She has many of the trisomy 13 markers, extra fingers and toes, dysphasia, blindness (Mollie has a bit of vision in one eye). By the time she was four months old we were so deeply in love with her that we couldn't imagine parting with her. Our other children begged us to adopt her, and when she was 6 months old her adoption finalized. We are grateful for every day we have with her.
Mollie is severely cognitively impaired, is wheelchair dependent, wears diapers, is unable to feed or dress herself. With that said, Mollie has a sweet personality, wins the heart of all who meet her, loves school and her family, and at 9 years old has her daddy wrapped around her extra baby finger. Over the past couple of years Mollie has developed a seizure disorder which has caused muscle spasms which left her with a broken femur three times in the last year. With seizures under control Mollie has returned to her happy self.
Initially keeping Mollie alive was our challenge. Moving forward we are trying to prepare for Mollie's future. She now weighs 55 pounds. Eventually we plan to make our entire house wheelchair friendly but for now we need to put a ramp in so that we can get her in and out of our house. Presently my husband is the only one strong enough to move her about, which means he has to miss work for every appointment she has as well as getting her in and out for school. my husband can build the ramp, but we cannot afford the materials. Because she and her wheelchair are heavy our goal is to get a vehicle that she can board while in her wheelchair, no lifting or transferring which would be safer for her and allow her to go places with her family, which would improve her quality of life immensely.
My husband and I turn 60 this year. Although we have no plans to retire, we are trying to prepare as best we can so that we will be able to care for Mollie for many years to come. Any help at all would be greatly appreciated.
and her her name is Mollie Faith. Mollie was born December 22nd, 2005. She was born with Trisomy 13, a chromosonal defect that causes multiple anomalies. these babies often die at birth, less than 1% live to be a year old. There are about 100 children/adults with trisomy 13 known to be alive worldwide.
Trisomy 13 was not Mollie's only challenge at birth. Her mother felt unable to care for her due to her diagnosis and poor prognosis. Finding a foster home for an infant with a grave prognosis is difficult at best.
My husband and I had fostered for 20 years. During that time we had 30 special needs infants come through our home (I am a nurse with a newborn intensive care background). The agency called early January 2006. They told us of a 2 week old baby girl who was being discharged to Hospice Care, life expectancy likely less than 3 months. I knew little about Trisomy 13 but quickly educated myself. What I learned was grim. My husband and I talked, we both agreed that we didn't want her to die without a family. We brought her home the next day to hold her and love her as long as we could. Day after day night after night we watched over her, expecting her to leave us at any minute, but there was a different plan for Mollie. There were many struggles during her first few months, a severe swallowing disorder made feeding and gaining weight really difficult. She has many of the trisomy 13 markers, extra fingers and toes, dysphasia, blindness (Mollie has a bit of vision in one eye). By the time she was four months old we were so deeply in love with her that we couldn't imagine parting with her. Our other children begged us to adopt her, and when she was 6 months old her adoption finalized. We are grateful for every day we have with her.
Mollie is severely cognitively impaired, is wheelchair dependent, wears diapers, is unable to feed or dress herself. With that said, Mollie has a sweet personality, wins the heart of all who meet her, loves school and her family, and at 9 years old has her daddy wrapped around her extra baby finger. Over the past couple of years Mollie has developed a seizure disorder which has caused muscle spasms which left her with a broken femur three times in the last year. With seizures under control Mollie has returned to her happy self.
Initially keeping Mollie alive was our challenge. Moving forward we are trying to prepare for Mollie's future. She now weighs 55 pounds. Eventually we plan to make our entire house wheelchair friendly but for now we need to put a ramp in so that we can get her in and out of our house. Presently my husband is the only one strong enough to move her about, which means he has to miss work for every appointment she has as well as getting her in and out for school. my husband can build the ramp, but we cannot afford the materials. Because she and her wheelchair are heavy our goal is to get a vehicle that she can board while in her wheelchair, no lifting or transferring which would be safer for her and allow her to go places with her family, which would improve her quality of life immensely.
My husband and I turn 60 this year. Although we have no plans to retire, we are trying to prepare as best we can so that we will be able to care for Mollie for many years to come. Any help at all would be greatly appreciated.