In April 2024, Zoe discovered she was pregnant and we were filled with excitement and anticipation of what was to come. At 10 weeks, we did an NIPT test which said we had a high risk of having a child with Trisomy 13. At that point, we learned we were having a baby girl. From that point onward, we had no idea what to expect. The pregnancy was a blur of appointments and continual scans. At around 18 and a half weeks we got the devastating news that baby girl did indeed have Trisomy 13 and we were told what that meant. At this point, she had a confirmed heart defect and a cleft lip and palate, but we held on to HOPE. We had no idea if our baby girl would even make it to term, but we fought for her every step of the way. At this point, we thought and prayed about her name a lot. We decided on her name, HOPE Rae Kolbe. We imagined she would be a ray of HOPE. We were told that she might not survive the birth, but after Zoe was induced on the 16th December 2024 at 37 weeks, our baby girl continued to defy the odds. She was doing so well, but after 25 days her heart simply gave up. Due to the Trisomy 13 diagnosis and the poor life expectancy that many people seem to associate with the condition, we struggled to get HOPE the heart surgery she needed. There's no knowing if she'd still be here if she managed to have the surgery, but we know that we did absolutely everything we could for our little girl while she was alive. We got a full 25 days with her before she passed away in Zoe's arms on the 10th January 2025.

Before Zoe got pregnant, we had never even heard of Trisomy 13 and had no idea what it was or how it would affect our child. We are raising money for SOFT UK in her memory to help raise more awareness of this rare genetic condition. Children with Trisomy 13 should not be discounted because of their diagnosis. HOPE proved to us that every child deserves to live. She fought until the very end! We will spend the rest of our lives being forever thankful for the 25 days we got to spend with her. We thank God for her story and all the lives she touched and impacted in her incredibly short life!

About SOFT UK:

SOFT UK was started to provide a much-needed support network for children and families affected by Pataus' and Edwards' Syndrome and related disorders. Since its humble origins almost 30 years ago, SOFT UK has grown into a much larger organisation run by families for families.

Ninety percent of the volunteers and staff team have a link with Trisomy within their own families, helping to alleviate the isolation that comes with a Trisomy diagnosis.