$15,800

Of all the worthy causes, why DTM? Here's my story.  

In August 2009 I received a referral from the Child Developmental Services Agency, about a child with special needs who needed my services, Developmental Therapy. It was a baby girl of only 8 months, who had “Hurlers.” I decided to do some research on “Hurler’s syndrome” and found out that it is a very rare and difficult diagnosis. Basically it means there are problems with the enzymes in the body leading to a huge list of medical problems, even death. In most cases a bone marrow transplant is recommended for treatment, which makes it even more risky as the child’s immune system is destroyed during treatment which can lead to numerous complications.

With a little information in my pocket, I met the sweet baby girl Megan. Immediately I felt very overwhelmed by the medical issues this baby was facing, as her Grandmother and Mother explained to me her journey of receiving medical treatment at Duke Hospital. They had traveled to NC for treatment because their smaller hospital in Kentucky was not able to treat such a rare disease. They proceeded to tell me about Evline; Megan's sister who died from Hurlers syndrome at the age of one. They hoped with such a fast diagnosis after birth and an earlier bone marrow transplant for Megan, at only 3 months old, would help her to live longer than her sister. Megan’s Grandmother then proceeded to show me a notebook full of medication information and notes detailing what she must give to Megan every day to treat her post-transplant.

I couldn’t wrap my head around it.

They were living out their lives in a hospital as their baby girl was fighting for their life. And they were doing it all alone.

“Who was their shoulder to lean on? Who was supporting them through this difficult journey? Were there other families going through similar circumstances without family or friends nearby? Where do they go if their only housing options are full?” 
The list of questions became longer and LOUDER in my head as time went on.

I decided that I was going to be their shoulder. Whether they needed me to sit with Megan so they could leave the hospital, or to advocate for them to help find them housing, or encourage them and remind them of God’s truths. Whatever the day called for, it was my pleasure to give it to them.  

I knew that God had handpicked me to work with Megan’s family, and I had the blessing to do so for one year before she passed away. During this time my eyes were opened to what life in a hospital is like when you love someone who is dying. That year, I learned how to love a child so deeply no matter the cost, and how to serve a family who had no one around. I saw the difficulty in finding housing, the challenges of being from out of state and knowing no one, and the distinct need for spiritual support during life and death circumstances.

Also, I learned that it's never too late to add a few more members to your family.
A family by love instead of a family by blood.

Bottom line, there needs to be holistic support for families like theirs and I became determined to make this journey along the medically fragile path easier for the next family in their shoes.
 
These fragile shoes that we all are so blessed not to have to walk in.
 
Through this experience I became the Executive Director of the DTM Foundation. An organization that hopes to fill the spiritual, emotional, and physical needs of families with medically fragile children.
 
God willing, through DTM, we will make fragile shoes easier to walk in. 
 
How can you help?

*Help me support DTM by making a donation. The process is fast, easy, and secure.
You could also become a volunteer with our organization!
Thanks so much for your support!

I am a fragile fighter!