This has been a rough weekend mentally. As you saw from the site announcement another FA child has gone to heaven. 6 year old Ashlynn was such a fighter. Her bone marrow transplant and the medications that go with it really took their toll on her organs, particularly her lungs. She passed away on Saturday afternoon, according to her mother’s facebook posting, in her arms around 1 pm. She just had a trach placed on Thursday in hopes that it might help her overcome the lung issues while on the ventilator. We reached out to her parents offering support and help since we had been down the trach and then the ventilator path with Elias. It was sad to hear and really created a somber mood for the weekend. It is such a senseless pity that these children have to suffer as they do, but they all do it with such warm loving and inspiring spirits.
Last weekend was a Pink for Bravery Day in honor of a family in the United Kingdom who was celebrating the life of their daughter they had lost a few years ago from FA. It began as something they just did among themselves, but this year it spread to the rest of the FAmily. All day on facebook people were sending photos to this family of them dressed in Pink. It was touching to see, we can only imagine how the family felt. There may only be a few of us families in the world with FA, but it is probably one of the most caring and supportive group of individuals, most of whom we have never met, brought together by an unfortunate disease. Which FYI in case you missed it we got an official tally on the first International Fanconi Anemia Day, $135,000 raised for research! That is quite an effort for a first year. It is going to take efforts like that though to beat FA! The past few weekends have been a somber reminder of how important it is to support research for FA. Our scientist and doctors have made incredible strides, but there is still so much yet to learn.
Thanks for taking the time to listen to us about this. We try not to dwell on the life-threatening side, but when it slaps you in the face with each passing child and adult it is difficult to ignore. It is day like these where we hold each other close and thank God for the days he has given us and try to above all else be true to being a family full of love, hope, and each other.