Our Story

Molly and Julia are number 4 and 5 in our family. From a very young age these two have been happy as can be. They showed signs of being delayed but we thought it was just because they were born early. It wasn’t long before we realized they weren’t catching up. They both were not strong and had curved feet which made it difficult to stand. The doctors ran tests but no one had answers. After a series of genetic testing and no answers we just elected to treat the symptoms. They had eye surgeries and a lot of therapy.
Throughout the process they remained a source a happiness for our family. They were mostly happy except when they would get frustrated because they couldn’t communicate well with others. All this time we wondered if there was something more we could do. We felt a diagnosis could possibly help guide us in their therapies.

They both have a huge appetite and struggle to feel full so we thought maybe they had Prader Willi syndrome. It was a difficult process but we finally convinced a doctor to test them for Prader Willi. The test didn’t come back with Prader Willi but we did discover that they came back with Med13L.

What a blessing it was to have a diagnosis. We found this information out right before their 10th birthday. The girls are still the happiest little girls ever. They are very different yet very much alike. Julia loves Barbies, mermaids and anything girlie. She can be a little dramatic and demanding. Molly loves Spiderman, Batman, sports and videogames. She is more laid back and quiet. They love each other and will say that each other is their best friend.

Having these two special children of God has been maybe the biggest blessing to our family. Today the twins are 11 years old. They do very well in school. They can read some sight words, do basic math, and their speech has improved a lot. 

We are excited for what the future has in store for them and we are grateful for their diagnosis.