How you can help...

We've been asked a lot how people can help Lyla or other MPS patients or children needing a bone marrow transplant:
- sign up to be a potential bone marrow donor through Be The Match. Its super easy and only requires a saliva swab. https://bethematch.org/…/donate-b…/join-the-marrow-registry/
- donate or let pregnant friends know they can donate umbilical cord blood after their baby is born. Lyla found a match from the millions of donated cord blood around the world. Cord blood has been found to be more successful in hurler patient transplants and is readily available which is so important since we are racing against the clock for her to receive a transplant before the disease affects her brain.
https://bethematch.org/support-the-cause/donate-cord-blood/
-give blood through the American Red Cross or other organization. Lyla also inherited thalassemia minor which causes low white blood cell count and requires her to have frequent blood transfusions.  So many other people need transfusions as well
http://m.redcrossblood.org/learn…/blood-facts-and-statistics
- help find a cure by donating through the MPS society. http://mpssociety.org/donate/
- ask your pediatrician if they have ever heard of MPS and ask her obgyn if your state is going to start testing for MPS through newborn screenings. So many babies go undiagnosed until early childhood when the disease has already had significant physical and mental impacts that can't be reversed. Treatment can only stop it from getting worse.
- create awareness by sharing this post or any other MPS, BetheMatch, Red Cross, or related information in whatever country you live in.