Hope for HD - 10 km Walk

Haylie is our 6-year-old daughter who was born with total colonic Hirschsprung’s Disease. Haylie was diagnosed with HD at 7 days old and she spent the first 3 weeks of her life in the NICU. We knew about Hirschsprung’s Disease because her dad was also born with it, but we quickly learned that no two cases are the same.

The most common type of Hirschsprung’s disease is short-segment and means that less than 1/3 of the large intestine (colon) is missing the nerve cells that help propel stool through the digestive tract.

Unfortunately, Haylie has the most severe type of HD called total colonic HD which means that her entire large intestine (colon) is affected. The last 25 cm of her small intestine are also affected.

Haylie had her first surgery at the age of 2 months. Since then, she has had 29 surgical procedures and we have spend just under 250 nights in Children’s Hospital.

Haylie is strong and has been resilient throughout her short life. She has been through more than most adults go through in a lifetime and she has done it with grace.

We have learned a lot about Hirschsprung’s disease in the last 6 years, more than most of the healthcare providers we have seen and we have learned how much we are capable of when it comes to keeping Haylie safe and advocating for her and others. We have definitely had our struggles, but we have also become better parents, able to adapt to the hurdles life and this disease throws at all of us. Hirschsprung’s disease doesn’t just affect the individual, it affects the entire family.

I created the HD Heroes Family Support Network with the goal of promoting awareness, providing a strong support network and advocating for resources to improve the lives of those affected by Hirschsprung's disease.

On June 15, 2024 we are walking 10 KM in the “Hope for HD” Walk. All proceeds go directly towards not only helping the HD patients and families of today, but the families affected in the future by working towards the common goal of finding a cure.

The HD community is a group of fearless and relentless fighters, striving to protect, educate and advocate for better systems, access to the best medical resources, continued research and development of treatments and ultimately a cure.

The walk is a fun day in beautiful Birds Hill Park, where we get to visibly demonstrate our advocacy for Hirschsprung’s disease and meet other HD families.

We ask that you share our posts, donate to our cause or join us on walk day.  

Please check us out:

https://m.facebook.com/hdheroesmb

www.hdheroesmb.net

With your support, we can help the HD community and fund innovative research.

Please donate today to help us reach our fundraising goal and to help improve the lives of all Manitobans living with Hirschsprung’s disease.

THANK YOU!