Mother's Day Blog 2017

Mother's Day Blog 2017

This Sunday, May 14th is Mother's Day. The day we put in a little extra special sparkle to show our moms how much they mean to us and how much we appreciate and  love them! REACH has it's own amazing mom's on it's board: Tory, Isabelle & Liz. These truly remarkable women wanted to share some of their stories and experiences with you and tell you about their awesome HD kids that make them some of the most proud, happy  & loved moms around!


HD MOM, EVENT PLANNER EXTRAORDINAIRE TORY HEUSTON SHARES HER TOUCHING STORY ABOUT HER SON AVERY

Being a mom is simply put, the best job ever!

My name is Tory Hueston, mother of two, but specifically, one of the most amazing children you will ever meet- AVERY!  Avery was born a seemingly healthy 8lb 12 oz little boy, but within days, his health began to seriously deteriorate.  On day 10 of Avery’s life, we found ourselves rushing him to the ER after vomiting bile. He was immediately taken for an upper GI to ensure that his upper bowel was not twisted. Avery was diagnosed with Hirschsprung’s Disease at 14 days old.  At 20 days old, Avery underwent an eight-hour surgery to do a series of biopsies to find out how much of his colon was actually affected.  At this time, he was diagnosed with something called total colonic Hirschsprung’s disease. His entire colon and 7cm of his ileum were aganglionic (without ganglion cells). At 22 days old, Avery underwent another 5-hour surgery to give him an ileostomy. We were in the PICU for nine long, exhausting, emotional days. I can tell you right now, there is no mother in this world that envisions her child with a bag of poop hanging off his belly!  We all hope and pray for a healthy child, but ostomy bags? 

After all this I knew I had to do something to help. I started organizing a Golf Tournament HD fundraiser for REACH called The Avery Kent Classic to raise awareness for Hirschsprung Disease. The "Kent" part of the name is dedicated to my brother who died from HD, and in honor of him, it's also Avery's middle name! I love my son so much and want every family who has been touched by HD to thrive. It is possible, manageable, and if we work together to raise awareness by fundraising, talking and sharing, we can make a difference. 

Happy Mother's Day everyone! Give your kids a big hug today!

 

Warmest, 

Tory, HD Mom


REACH BOARD TREASURER, MOM TO ADRIEN, ISABELLE SCHNADIG SHARES THE STORY OF HER AMAZING SON & SOME LOVING ADVICE

Hello to everyone and I wish you a wonderful Mother's Day with your precious children. 

I am a mother of four.  Our younger son Adrien has TCHD and Down Syndrome.  His early childhood was very challenging with a lot of hospitalizations due to GI illness.  In addition he has developed many food allergies which made his diet very difficult.  Today despite all this he is really thriving; he is 11 years old, much stronger and no longer requires systematic hospitalization.  

Over the years my husband and Ihave learned 4 GOLDEN RULES which I hope can be of assistance to you! 

1. Keep your child well hydrated each day (water otherwise pedialyte when they are sick) . 

2. Irrigate them when they are coming down with an illness and when you notice that they haven't had a or enough BM during the day. 

3. Help them to release gas especially when they seem bloated. 

4. Give them their probiotics.

 

Thank you for reading. Please, if you wish, share with your friends & families. 

Isabelle


HD MOM LIZ CRAWFORD SHARES SOME LOVE

ABOUT HER SWEET LITTLE BOY ROO

Mother's Day is about the mom's, but I can't help make it about my kids because they are my world.

My children have been my greatest gifts and my most important teachers. Our journey has been full of love, worry, joy, laughter and tears. My son Malachi has taught us all about what it means to weather the storm. Malachi was born with short segment Hirschsprung Disease and he has shown the utmost courage and bravery through the worst of times. In and out of the hospital he persevered and remained strong. He's been our little warrior, our teacher and above all else what I always wished for in a child. I ask him every day, "Do you know what I wished for on every shooting star?" Malachi responded, "What mommy?" I replied, "You and your sister." I would not change a thing. 

Happy Mother's Day to all moms. 

A job not for the faint of heart. 

 

Love, 

Liz

The 4th Annual Reach Symposium in Toronto, ON at Sick Kids Hospital

The 4th Annual Reach Symposium in Toronto, ON at Sick Kids Hospital

Toronto was host to this years 4th Annual Reach Symposium, which focused on families; "Those Living with and Affected by Hirschsprung Disease". The majority of the audience were local Ontario HD families with a handful of HD children. Reach also invited several out of town guests to be a part of the Expert Panel including Dr. Carlo Di Lorenzo, Cincinnati Children's Hospital and Reach's very own Dr. Allan Goldstein. 

Full house Q & A with Dr. Carlo di Lorenzo and Dr. Jacob Langer

What a lineup! The presentations varied from the history of Hirschsprung’s, bowel movement, children’s diet, a comforting and informative parent panel and an expert panel discussion. Everyone thoroughly enjoyed all the presentations, but the parent panel was definitely a crowd favorite! Several volunteers and their children formed the panel, sharing stories and experiences with Hirschsprung’s.  Through the timeless art of storytelling, parents shared their touching stories which created a warm feeling of hope that resinated among the rest of the parents dealing with similar issues.  In keeping with the symposiums theme, the parent panel gave hope for those living with and affected by Hirschsprung Disease, and a more optimistic outlook for the future of their own children's lives.  

Parent panel (Left to right) Susan G, Katie W & Daniel S. 

Reach encouraged attendees to bring their HD kids, and there were about half a dozen in attendance. Some tasty snacks and Starbucks coffee were provided for everyone in between presentations and the kids really enjoyed the HD “swag table”. Everyone was eagerly asking about the t-shirts, which are available on the reachhd.org website. However, who doesn't love winning? In between the presentations Reach’s Communications Marketing Coordinator, Kate, gave away some Shit Happens t-shirts to a few lucky audience members who correctly answered trivia related to the days presentations. This activity really amped up the days atmosphere and the kids loved having their picture taken wearing the shirts...and Dr. Goldstein!

Reach wanted to send out another HUGE Thank You to everyone involved in putting on this year's symposium: Sick Kids Hospital for hosting, organizers Jennifer Ionson NP, Kimberly Colapinto NP, Dr. Jacob Langer, the Reach Board and Communications Marketing Coordinator Kate Yacula. Until next year!

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