For those of you who know Amy and Amber, you know that they are amazing and strong little ladies. Unfortunately, life is an extremely precious gift that we tend to take for granted. Please read on and I will share their reality.
In February of 2014, Amy was diagnosed with Mucopolysaccharidosis I (MPS-I), a rare genetic disorder that affects many body systems and that leads to organ damage. A diagnosis that NO parent ever wants to hear about their child. Because of this diagnosis it was suggested that we bring our younger daughter in to also be tested. Our worst fear became a reality when Amber was also diagnosed with this horrible disease two weeks later. Since their diagnosis, they have undergone many tests and procedures.
On May 15, 2014 they began a weekly 6 hour enzyme replacement therapy that is given intravenously at Boston Children's Hospital. They will receive this treatment every week for the rest of their lives! At this time there is NO CURE for this horrible disease.
Since Amy's diagnosis she has had many tests, MRI's and surgeries. Last summer, Amy underwent brain and spine surgery to release fluid that had built up around her spinal cord. Last month, Amy had bilateral carpal tunnel surgery, a surgery that no 6 year old should ever have to go through. Amy and Amber also receive weekly therapies to help maintain the strength and motion in their muscles.
Both girls are followed by a team of doctors and specialists at Boston Children's Hospital. Since they have been diagnosed they have never complained about treatments or procedures that they need to have.
With all of these weekly treatments, co-pays, trips into Boston Children's Hospital, parking, gas, time out of work and all other expenses that come along with MPS this disease has taken a toll on our ability to give our daughters the experiences that "typical" six and two year olds have with their families. Any donations that we receive will help cover the best summer ever! Help us celebrate our two precious little girls, Amy and Amber. This money is going toward a summer celebration that they will never forget. Any extra money will be used to cover their medical expenses. Please help us raise the funds to make their dreams come true.
We thank you for reading this and thank you for any donations that you make.
In February of 2014, Amy was diagnosed with Mucopolysaccharidosis I (MPS-I), a rare genetic disorder that affects many body systems and that leads to organ damage. A diagnosis that NO parent ever wants to hear about their child. Because of this diagnosis it was suggested that we bring our younger daughter in to also be tested. Our worst fear became a reality when Amber was also diagnosed with this horrible disease two weeks later. Since their diagnosis, they have undergone many tests and procedures.
On May 15, 2014 they began a weekly 6 hour enzyme replacement therapy that is given intravenously at Boston Children's Hospital. They will receive this treatment every week for the rest of their lives! At this time there is NO CURE for this horrible disease.
Since Amy's diagnosis she has had many tests, MRI's and surgeries. Last summer, Amy underwent brain and spine surgery to release fluid that had built up around her spinal cord. Last month, Amy had bilateral carpal tunnel surgery, a surgery that no 6 year old should ever have to go through. Amy and Amber also receive weekly therapies to help maintain the strength and motion in their muscles.
Both girls are followed by a team of doctors and specialists at Boston Children's Hospital. Since they have been diagnosed they have never complained about treatments or procedures that they need to have.
With all of these weekly treatments, co-pays, trips into Boston Children's Hospital, parking, gas, time out of work and all other expenses that come along with MPS this disease has taken a toll on our ability to give our daughters the experiences that "typical" six and two year olds have with their families. Any donations that we receive will help cover the best summer ever! Help us celebrate our two precious little girls, Amy and Amber. This money is going toward a summer celebration that they will never forget. Any extra money will be used to cover their medical expenses. Please help us raise the funds to make their dreams come true.
We thank you for reading this and thank you for any donations that you make.