Shining for Sarah
Donation protected
Hello! This campaign is to help with Sarah's medical and equipment expenses. Please read her amazing story below.
Sarah is a 12 year old girl who has a rare form of Muscular Dystrophy called CFTD. She's the daughter of Trish & Eric Ehrenfried of Urbandale, IA.
Eric is full-time Army Reserves and is frequently stationed elsewhere within the USA and sometimes overseas. Trish stays home to take care of Sarah who requires 24-hour monitoring and care. Unfortunately all of Sarah's specialists are here in Iowa so mom and Sarah are unable to move with dad when he goes. Changing specialists every year or two would be too hard on Sarah.
At birth Sarah spent 10 days in the NICU at Mercy Hospital in Des Moines for not holding her oxygen levels as high as necessary. She was sent home in a special car seat/bed as she could not hold her head up well enough to breath.
At 2 months she had a feeding tube inserted into her nose due to lack of weight gain. Unfortunately this led to a lot of vomiting which led to dehydration
At 9 months we switched GI specialist and a G-tube was inserted, which she responded to well and began to thrive.
June 8, 2006 Sarah aspirated while drinking water and was taken to Mercy Hospital in Des Moines, IA. They discovered that she would stop breathing several times during the night. A tracheotomy was suggested.
June 18, 2006 After a 10 day stay at Mercy Hospital, Sarah went to University of Iowa Children’s Hospital for a second opinion on getting a tracheotomy. ½ an hour after arriving there Sarah stopped breathing and was moved to the PICU. She was placed on a Bi-PAP machine for the night to see if this would work.
June 19, 2006 At 9:30AM, about 30 minutes after being removed from the Bi-PAP machine, Sarah stopped breathing, her heart stopped and right lung collapsed . She was immediately intebated and placed in a drug induced coma. The tracheotomy was done a few days later, and a surgical procedure called nissen was done to keep her from vomiting.
Sarah has had 4 ear surgeries as she has problems with drainage and gets infections easily. This has had a slight effect on her hearing.
June 9, 2013 Sarah underwent spinal surgery to have rods placed in her back due to her spine curving and lungs collapsing from the pressure. This was 6 hour surgery and she had small skin abrasions around her face when it was done due to skin breakdown. Her body started rejecting the stitches instead of absorbing them about 2 weeks after surgery. A spot about 1 ½ inches wide and 1 inch deep on her back opened up and we had to wet/dry pack it for almost a month to get it to heal.
Sept 9, 2014 Even though Sarah sees a dentist every 6 months she still had to have oral surgery to clean her back teeth and pull baby teeth that would not come out on their own. It should have only taken an hour but took 3 hours when they couldn’t get her mouth open more than 14 mm. The oral surgeon had never worked on a mouth opening that small. To make matters worse, the pediasure Sarah has to drink every day for nutrition is wearing away her enamel on her back teeth. All pediasure is now fed via g-tube while she sleeps at night.
Sarah is in the Talented and Gifted program at her school and her favorite subject is Science. She is our own "mad scientist" and always has a science project going on somewhere in the house. She loves to be outdoors going on walks, riding her bike (which was purchased with a 2014 fundraiser) and reading everything she can get her hands on.
Sarah will always use a ventilator and be wheelchair dependent. But that doesnt slow her down! Sarah is an excellent student who loves to read, play board games and be outdoors as much as she can. We try to provide Sarah as normal a childhood as possible. With this goal comes costly equipment not covered by her insurance.
As Sarah continues to grow, her equipment needs are continuously changing, ie., swing and other outdoor equipment, special bicycle, shower chair, etc. Thank you for taking time out of your busy schedule to read about Sarah journey and our funding needs.
Sarah is a 12 year old girl who has a rare form of Muscular Dystrophy called CFTD. She's the daughter of Trish & Eric Ehrenfried of Urbandale, IA.
Eric is full-time Army Reserves and is frequently stationed elsewhere within the USA and sometimes overseas. Trish stays home to take care of Sarah who requires 24-hour monitoring and care. Unfortunately all of Sarah's specialists are here in Iowa so mom and Sarah are unable to move with dad when he goes. Changing specialists every year or two would be too hard on Sarah.
At birth Sarah spent 10 days in the NICU at Mercy Hospital in Des Moines for not holding her oxygen levels as high as necessary. She was sent home in a special car seat/bed as she could not hold her head up well enough to breath.
At 2 months she had a feeding tube inserted into her nose due to lack of weight gain. Unfortunately this led to a lot of vomiting which led to dehydration
At 9 months we switched GI specialist and a G-tube was inserted, which she responded to well and began to thrive.
June 8, 2006 Sarah aspirated while drinking water and was taken to Mercy Hospital in Des Moines, IA. They discovered that she would stop breathing several times during the night. A tracheotomy was suggested.
June 18, 2006 After a 10 day stay at Mercy Hospital, Sarah went to University of Iowa Children’s Hospital for a second opinion on getting a tracheotomy. ½ an hour after arriving there Sarah stopped breathing and was moved to the PICU. She was placed on a Bi-PAP machine for the night to see if this would work.
June 19, 2006 At 9:30AM, about 30 minutes after being removed from the Bi-PAP machine, Sarah stopped breathing, her heart stopped and right lung collapsed . She was immediately intebated and placed in a drug induced coma. The tracheotomy was done a few days later, and a surgical procedure called nissen was done to keep her from vomiting.
Sarah has had 4 ear surgeries as she has problems with drainage and gets infections easily. This has had a slight effect on her hearing.
June 9, 2013 Sarah underwent spinal surgery to have rods placed in her back due to her spine curving and lungs collapsing from the pressure. This was 6 hour surgery and she had small skin abrasions around her face when it was done due to skin breakdown. Her body started rejecting the stitches instead of absorbing them about 2 weeks after surgery. A spot about 1 ½ inches wide and 1 inch deep on her back opened up and we had to wet/dry pack it for almost a month to get it to heal.
Sept 9, 2014 Even though Sarah sees a dentist every 6 months she still had to have oral surgery to clean her back teeth and pull baby teeth that would not come out on their own. It should have only taken an hour but took 3 hours when they couldn’t get her mouth open more than 14 mm. The oral surgeon had never worked on a mouth opening that small. To make matters worse, the pediasure Sarah has to drink every day for nutrition is wearing away her enamel on her back teeth. All pediasure is now fed via g-tube while she sleeps at night.
Sarah is in the Talented and Gifted program at her school and her favorite subject is Science. She is our own "mad scientist" and always has a science project going on somewhere in the house. She loves to be outdoors going on walks, riding her bike (which was purchased with a 2014 fundraiser) and reading everything she can get her hands on.
Sarah will always use a ventilator and be wheelchair dependent. But that doesnt slow her down! Sarah is an excellent student who loves to read, play board games and be outdoors as much as she can. We try to provide Sarah as normal a childhood as possible. With this goal comes costly equipment not covered by her insurance.
As Sarah continues to grow, her equipment needs are continuously changing, ie., swing and other outdoor equipment, special bicycle, shower chair, etc. Thank you for taking time out of your busy schedule to read about Sarah journey and our funding needs.
Organizer
Trish Ehrenfried
Organizer
Urbandale, IA