Medical Mom Kyla; Hi! I’m New Here :) Mom of BellaBrave

Kylact

Hi Everyone,

This is my first post on the site and I chose the Intestine forum as my daughter Bella is listed and wanting for a full bowel transplant (small and large). She was born with Hirschsprungs Didease, and battles intense flare ups a lot that involve painful bloating, chronic pseudo obstruction and dismotility issues. Bella is now 8y old and she has been waiting for new bowels for almost 2 years. She was listed in 2020 due to loss of vascular access and bowel failure.

You may know us from TikTok or IG as our handles are @kylact / Bella has gained quite the following for being brave through this life with a smile on her face and perseverance to find the joy in any situation.

I am Kyla, her mom. I have a son Waylon who is 3y old and my hubby’s name is Lyle. We live on an acreage in Saskatchewan, Canada and own a tree farm as well. I used to teach full time but have had to give that up due to Bellas intense medical needs. But thankfully becoming a content creator and being able to collaborate with brands has allowed me to support my family in such a way that allows me to be available any time Bella needs to go back into hospital or tend to her many daily medical requirements.

Thanks for reading through my novel here, ha ha and I am looking forward to conducting an AMA in July! Stay tuned.

AliEm14

Kyla! We are so excited to have you here with us. I love you, and Bella, and your content. And I can’t wait for your AMA

SRKakani

Hi Kyla it is nice to meet you! Welcome. I also just started following you and Bella on instagram :) My name is Swapna. I from Alabama. I was born 32 years ago with Short Bowel Syndrome due to ileal atresia. I have lived on TPN and tube feeds since birth. I have had countless IV line infections causing me to have 31 central lines and loss of vascular access in the neck. I had a small intestine transplant in June 2014. This week I will be celebrating my 8th transplant anniversary! I ended up going for transplant because after one more abdominal surgery to save the gut I developed fistulas between the skin, small intestines, colon, and bladder. We removed the small intestine and colon. 2 years later I went for an isolated small intestine transplant. I have had highs and lows since but overall doing better than where I was before transplant (24/7 tpn, gi contents draining into a leg bag 24/7, no food by mouth). I now do adovcacy work in the rare disease, short bowel syndrome, and transplant communities. This is a great place to gain support. I also created a facebook support group dedicated to the pre and post small intestine and multivisceral transplant community. It is called "Intestinal and Multivisceral Transplant Support Group." Another very informative organization for our community is Transplant Unwrapped at www.transplantunwrapped.org. I am happy to connect and talk to you further.

AliEm14

@SRKakani so nice to meet you! I was also born with a rare disease, which resulted in my liver transplant in 2020. I think we who entered this medical space at a young age have really interesting insight on this whole process.

One thing I've noticed is when I was diagnosed in the 90's (I'm not sure how it is now. maybe @Kylact you know?) there was next to nothing for support for my parents. They were kind of handed all my medical issues and then sent out the door, which then overflowed into how I grew up. I see a lot more support coming for pediatric patients now, where it's not just treating them as small adults. Pediatric care, especially transplantation and rare disease, is something I'm still super passionate about.

AnnMarie

Thank you @Kylact for sharing your "medical mom" story I can not wait to learn more

Sdey0522

Hello @SRKakani 👋🏽 - thank you for sharing- you're a #warrior of great proportions. 👍

Congratulations on your 8th transplantiversary! 🙏

Sdey0522

It's nice to meet you, @Kylact 👋🏽 Thank you for sharing about little Bella's journey. May God bless all of you 🙏

Looking forward to your #AMA in July. 👍