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The Lee Family
Let me start at the beginning. I lost my first child, Meredith, about 4 years ago at the age of two months. She had short gut syndrome. This means that half of her intestines were not functioning when she was born. This was devastating for my husband and I. Shortly after that, we were blessed with our daughter Samantha who is 3 years old now.
When I got pregnant again in November of 2018, I was overjoyed, but at week 21 of my pregnancy, I discovered that my daughter Abigail was 3 weeks behind in her growth. I went into a panic because of what happened to our first daughter, Meredith. However, my amazing doctors reassured me that everything would be alright.
When 24 weeks came around, she was still 3 weeks behind. We did every test possible. We did an amniocentesis and a huge panel of labs. Nothing came back, so you can understand my concerns.
At 31 weeks, I had to go into the hospital for several days because my daughter’s blood flow and fluid was extremely low. This time around, they ran tests on me. I came back positive for lupus, which causes huge growth restriction for a fetus. It was all starting to make sense. I was put on injections. This seemed to make everything normal again, except for her weight.
On July 23, 2019, at 1:55 pm, I met sweet Abigail for the first time. She was 2 pounds and 9 ounces of sweet sass. I was so blessed to have my child here, although a bit early. Little did I know this was only the beginning of our journey.
After 1 week of being in the hospital in downtown Houston, she was transferred from that hospital to the Woodlands NICU. They did everything according to the opinion that Abigail was just a preemie and that nothing else was wrong.
Then, 6 weeks had gone by and we were still not sure why she was not gaining weight. Something wasn’t adding up.
Our team decided that we should try a whole-exome test. This test would allow them to see every DNA, gene, and chromosome inside of little Abigail.
At week 8, we finally discovered our Abigail has the rarest form of dwarfism. This is MOPDII also known as Primordial Dwarfism. There are 100 known cases of this in the world. Because this type of dwarfism is so rare, none of us knew what would happen next. It was terrifying.
At present, we have been connected with a team of experts in Wilmington, Delaware. However, we are in Houston. We need help to afford the cost of traveling and seeing this team of doctors. While we are there she will she a geneticist named Dr. Bober. He and his partner specifically focus on this disease. She will also see an orthopedist because both hips are dislocated. Lastly, she will see a neurologist because her disorder is prone to aneurysm, strokes and Moya Moyas. They will also do an MRI of her blood vessels to see if there are any other issues going on there due to her other complications. The $20,000 we are asking for includes continued treatments and equipment that we will have to purchase for Abigail in the future.
Thank you so much for taking the time to learn about my little girl and her disorder. Our family is forever grateful for anything you might give and even if it’s just a prayer. We can use all that we get on this journey with our sweet Abigail.
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