This year as we have for the past 3 years since Xavier died, we will be doing the Love for Xavier Run to help very sick kids. Please join us this year to run or to donate! Having been with Xavier through his illness and his death, we are very motivated to help support other kids and families who are going through difficult medical situations.
It is such a challenging road when a child has a serious illness. We remember that when our community reached out to help us it meant so much. One friend sent drawings that were handmade by her sons for Xavier. Another paid for her favorite photographer to come take family photos for us. Some sent gift cards to help us get healthy food near the hospital. Others wrote us little notes of love and support, visited Xavier, or sent him gifts. Still others have been anchors for us since Xavier died. We received beautiful support in a number of different ways and it lifted our spirits and enabled us to give all we had to loving and caring for Xavier while he was with us.
We do this run on October 28th to support organizations who actually made a difference in our life when Xavier was sick and after he died, because we want other sick kids and their families to be helped in this way. We also organize this run to spend time with community, family and friends to honor the beautiful red-headed little boy who came into our lives for just a brief time, and changed our world completely. We welcome everyone in our community to join us...and that means you!
Please let us know if you'd like to join the run, or donate to the organizations we are supporting: Medically Fragile Children's Foundation of Northern California, Children's Gaucher Research Fund, and Jacob's Heart (Please see additional details on each organization below!)
LINK TO RUN: http://www.coastaltrailruns.com/h_halloween.html
October 28, 2018 at Kelley Park in San Jose
With love and care for all the medically fragile children around the world, and their families,
Analisa and Geoff
Mailing Address for Checks:
Analisa Baker and Geoff Perusse
PO Box 7185
Tahoe City, CA 96145
These are the organizations that donations from the run will benefit. Funds will be split equally between the three organizations with the exception of checks allocated to a specific organization which will go to that organization.
Medically Fragile Children's Foundation of Northern California- MFCF’s mission is to serve local children (up to 21 years of age), who require medical technology and intervention to sustain life, and connect them with the innate experiences associated with growing up, just as their peers without such limitations experience.. This includes kids with tracheostomies like Xavier had or who rely on ventilators or other medical equipment. Many of the children who benefit from MFCF are at the CRC where Xavier stayed for some time. MFCF does things like bring medically fragile kids and their families to the local park for a summer picnic, or to ride the train in Vasona park at Christmas--activities they would not otherwise get to do as each child needs extensive mobile equipment and accompanying medical staff to step foot out of the hospital.
Children's Gaucher Research Fund--This organization gives 100% of its received donations towards the research of Gaucher Type 2, the lethal infantile disease from which Xavier died. They also bring together researchers from around the world for their bi-annual conference which Geoff and Analisa were honored to attend this past year. Two of the researchers funded by CGRF, Ricardo Feldman and Tony Futerman have been making impressive progress in the study of the pathological mechanism of Type 2 Gaucher and possible thereupeutic targets, including publishing recent findings in a number of well-known scientific journals.
This research has implications beyond just the Gaucher disease, as the Gaucher gene is a major risk factor for developing Parkinson's disease. What is learned from studying Type 2 Gaucher disease may also help prevent, ameliorate, or reverse the loss of dopaminergic neurons in Parkinson’s disease. In fact, one of the top scientists from the Michael J. Fox Foundation attended CGRF’s recent conference! Here is a link to CGRF Summer 2017 Newsletter: http://www.childrensgaucher.org/wp-content/uploads/HelpingHands2017Summer.pdf
Jacob's Heart-- JH provides support for families of kids with cancer and other rare diseases. They provide things like groceries, rides to the hospital, psychological, spiritual and emotional support, and if needed, funeral or associated services and grief support. Jacob's Heart has become like family to us, and we are currently on the board for their Annual Forever Loved Retreat for those parents whose children have died from cancer or a rare disease.
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