Below is a prayer request from Pastor Brant and Susanne:
"Dear Hillcrest Family,
As some of you may know, Brant and I have a niece who has unique medical challenges.
For those who don't know, my niece, Hope, was born with an extremely rare syndrome called Hajdu-Cheney, and it affects many of her body systems. Only about 80 people have been confirmed since it was first medically described in 1948. Statistically, that's about 1 person per year in the world!! My sweet niece is quite literally 1 in 7.6 billion!!!
If you look up her condition, https://rarediseases.org/rare-diseases/hajdu-cheney-syndrome/ you'll see she has multiple health challenges encompassing bone, skeletal, pulmonary, hearing, and heart issues. In fact, she had two open-heart surgeries before she was 6 months old. She truly is a miracle!
However, with all her challenges, she is a fighter and full of love and life. She has made videos at Denver Children's Hospital to be shared with other children on how to be brave when they insert your I.V. She is a great encouragement to other kids with medical needs. She's very smart, does grade-level schoolwork, and her favorite subject is math. She loves many of the things other 12-year-old girls love, like swimming, all things animal (but especially cats and owls), Instagram, movie night, and tons and tons of Snapchat selfies with all the filters!!
Hope has yet another upcoming challenge to face. A condition related to her Hajdu-Cheney is ulcerative colitis. She has been battling the U.C. flares for the past 3+ years. After exhausting every other intervention to get the U.C. into remission, her specialist team at Children's Hospital, Denver, have relented, and have decided surgery is their last option, and it is time to take it.
Hope is scheduled to have a colectomy (removal of the colon) and ileostomy (opening in the abdominal wall for a colostomy bag) on Sept. 8. I will be going to help the family as COVID has complicated family members allowed in the hospital.
For someone as medically fragile as Hope, her doctors have informed us that this is a major operation with great risk and will require at least a week of hospitalization.
We would very much appreciate your thoughts and prayers for Hope and her family (Mom and Dad - Christina and Ben and little sister Lillie). We would like to see Hope come through this operation successfully and without complication. Pray that Hope would be able to return to being a joyful spirit, big sister, expert on owls, and a very special part of our lives and family.
Thank you,
Brant and Susanne Taylor"
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