Holidays can be a challenge for parents of children with holoprosencephaly, and there are so many uncertainties that we face especially at Halloween:
- What costume?
- How do we incorporate the wheelchair into the costume?
- How do we get to the front door if there are steps?
- My child has a g-tube, so what do we do with all of this candy?
- We won't spend this Halloween in the hospital again, will we?
Even with the challenges, we push forward, we make plans, and we create great memories with our children. And sometimes, our kids end up with the best costumes in the neighborhood!
To celebrate our special children, we invite you to share a photo of your child in costume and participate in our fundraising contest! Campaign for your favorite photo by sharing a link on Facebook, Twitter, email, etc. By collecting donation votes, $1 per vote, you'll be supporting Families for HoPE in its effort to bring HoPE to HPE families.
We all know too well that life can be unpredictable, so you may submit a photo of your child in costume from this current year or a past year.
This year, there will be two prize categories—(1) individual costume and (2) family or group costumes.
$100 Amazon gift card for individual costume with the most votes.
$100 Amazon gift card for the family or group costume with the most votes.
2nd place in both categories will be awarded with $50 Amazon gift cards.
3rd place in both categories will be awarded with $25 Amazon gift cards.
About Families for HoPE
Families for HoPE serves the families of infants and children receiving a diagnosis of Holoprosencephaly (HPE), the most common brain malformation in a developing fetus. HPE occurs between days 17-21 of fetal development, and typically ends in early miscarriage. Current studies indicate that only 3% of all fetuses diagnosed with HPE survive to delivery and a vast majority of these infants do not survive past six months of life, so the medical community offers very little hope when delivering this diagnosis to parents.
Many families who receive a diagnosis of HPE for their child prepare for imminent death. But if their child survives and needs specialized medical care, it can be a challenge of a different sort. The children who beat the odds need all the help they can get in order to survive and thrive. It has been shown that these children can learn, they can improve, and they can bring much joy to those who are privileged to know and love them.
Families for HoPE works to educate, encourage and support HPE families through the various stages of the HPE journey--from prenatal diagnosis to the challenges of caring for a child with HPE, to the complexities of end-of-life care and bereavement. Families for HoPE provides the information, education and resources that parents desperately seek and encounter difficulty to finding. Along with education and resources, we bring parents out of isolation and fear by providing them with parent-to-parent support and connection to a compassionate community of their peers whose experience caring for a child with HPE provides encouragement and knowledge so often missing from interactions with the medical community.
A diagnosis of HPE is heartbreaking and the statistics on HPE are devastating; however, the courage and determination of infants and children with HPE and their families are truly inspiring.