Heavy hearts

Our hearts are heavy as we pray for our fellow Hurler families who are hurting from the loss of their babies. We have been following two families through their Caring Bridge site since they were going through transplant at Minnesota. Little Brinley and LB both lost the fight. Our hearts go out to these families. We are reminded how very fortunate we are to have Rylie with us. She was also diagnosed with VOD, the same disease brought on by the chemo that these little babies struggled with. It is a miracle that Rylie is here with us, but we want all babies with Hurlers to have the opportunity to live a full and healthy life. Now more than ever we want to do something to help. There has got to be a better way than transplant. It isn't a good option, because the risks are too high and the process is too intense. Please join us in praying for these families who are hurting and for a better treatment for Hurlers.