Today we’d like to introduce you to Melissa Keller
Hi Melissa, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
In July of 2007, we brought home a healthy, sweet baby girl with all the dreams new parents bring home with their first child. However, that would all quickly change. At Abbey’s 2 month check-up her pediatrician noticed her head was not growing as it should, so he sent us to a neurologist and he diagnosed her with microcephaly. At 4 months we found out she was blind, and at 6 months she started having seizures and diagnosed with epilepsy. At 12 months found out she had no T-cells and therefore was immunodeficient. That was only the beginning of our journey.
Abbey was a medically complex child that overcame many health obstacles throughout her 11 ½ years including: deaf/blind, epilepsy, immunodeficiency, developmental delays, brittle bones, various blood disorders, liver failure, feeding intolerance, kidney stones, and those are just to name a few.
Abigail was seen by over 18 doctors and specialists, but was never given a formal diagnosis. She was what they considered rare and undiagnosed. However, we had a fantastic team of doctors that were able to manage Abbey’s complex medical issues for just over 11 years.
Despite all her limitations and illnesses Abbey was the happiest little girl I had ever known. Just a ray of sunshine to all who crossed her path.
No matter how she felt on any given day she always managed to smile and make you laugh.
Abbey’s time at Dell Children’s increased over the years where we spent an average of over a 100 days per year in the hospital over half her lifetime and during our time there we got very close to her team of specialists and nurses. Dell literally became a home away from home for us.
With all the negative and poor prognosis we were given we decided On Abbey’s first birthday, we would have a big celebration and in lieu of gifts, we just asked family and friends to give $5, 10, 20 dollars and we would in return donate that money to Dell Children’s in Abbeys name. We just wanted to give a little back for all they had done for us.
In 2012 , Dell created the Comprehensive Care Clinic to help the most medically complex children like our Abbey. It was basically a one stop shop for these kids and their families that had multiple specialists and needed coordination with medications, therapies, procedures, medical equipment like feeding tubes, hearing aids, wheel chairs, trechs, etc. I was proud to have served on the parent advisory committee of this new clinic.
Since it opened, we ended up giving a little money every year to the Comprehensive Care Clinic. Over the years, we bought sensory boards for the waiting room, art table, and even funded a library where the doctor would give out books to the kids at their annual well check. They called it Abbey’s library.
The joke was that only President’s and Abbey have libraries named in their honor.
So, with every year her birthday’s got bigger and the donations became larger. Until her 11th and last birthday there were over 150 people attended and we raised over $5000
And on February 7, 2019 our sweet Abbey received her angel wings. And after she passed people asked, what are you going to do for her birthday.
So, one evening at dinner with friends we decided we would have a dinner in Abbey’s honor and just take donations. I didn’t want it to be a party like we always had but just a dinner with friends and family.
So, these conversations with friends soon became a Board of Directors and that year 2019 Abbey’s birthday party became a gala. On what would have been Abbey’s 12th birthday we had the Abigail E. Keller Foundation’s first annual gala. And within those 6 short months of planning we raised over $75,000!!
We bought the Comprehensive Care Clinic equipment for a procedure room and we created an Endowment at the Dell Foundation for this Clinic. In addition, we had enough money to financial help families with medically complex kids that were affected by COVID in 2020. Many parents lost their jobs, and we were able to give 12 families, $1000 each to help during these difficult times.
We soon then became a 501c3, nonprofit organization. At our 2nd gala in 2020 we raised over $125,000. Which was Absolutely amazing!!
This money went toward funding the Child Life specialist for the new Pediatric Hospice Program at Dell Children’s.
During Abbey’s end of life journey we realized that we had always fought so hard for her that it was a very difficult decision to go into hospice. However, like most people we didn’t realize that pediatric hospice is much different than adult hospice. With a child you never lose hope and therefore a child can continue all treatment and receives what they call concurrent care while in hospice. And most importantly, children can go in and out of hospice so there is a great need to have continuity of care for children even to the very end.
And while going through our journey with Abbey, we got to see first hand the great need for a pediatric respite/hospice facility.
What if there was a place, where families could take their sick children and know they were in good hands with people that were familiar with their equipment and medical needs, so they could spend time with their other children, go on a vacation or tend to family emergencies. Or even take a weekend to just sleep!!!!
There is no such place.
If there was only a place, that a dying child and family could stay in peace and comfort not having to worry about the everyday distractions and just be in the moment with their child. That was in a home like setting. There is No such place for children.
After doing some research, it is sad for me to report there are only 7 such pediatric facilities in the United States.
Just for comparison the UK has 52 such facilities and is a 5th of the size of the US, which by this comparison the US should have over 266 homes. It is a very sad story.
Most people do not realize this huge need and it takes a community to make something like this happen. Lots of people and lots of money.
Now that we have a Hospice program at Dell, we can begin to work on building a facility. The AEKF is currently working on establishing the first pediatric respite/hospice facility here in Central Texas.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
It’s been truly incredible to see how much we’ve grown, but that success is deeply rooted in the support of our community. We continue to share Abbey’s story and advocate for families with medically fragile children and those at the end of life. By raising awareness, we’re building a strong base of support to fund Abbey House, a much-needed resource for these families.
That being said, none of this would have been possible without the dedication of so many friends and family members. For over three years, we operated with an all-volunteer board that gave their time, talents, and resources to make this vision a reality. As we’ve grown, we brought on a part-time administrative assistant, and today, we have a small but mighty team—one full-time and two part-time staff members. Personally, I’ve dedicated the last six years as President and Founder, and it’s been the most meaningful work of my life.
As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
The Abigail E. Keller Foundation supports medically fragile and terminally-ill children as well as their families throughout their unique journey and at end-of-life.
Our Vision: The Abigail E. Keller Foundation aspires to design and build the first pediatric respite/hospice facility in Texas.
The Abigail E. Keller Foundation addresses critical gaps in care for medically fragile and terminally-ill children by providing support to alleviate the overwhelming burdens that families face when managing complex medical challenges. All programs work directly with the social worker to identify and submit an application for the families under their care that are identified as experiencing financial hardship.
Financial Assistance Grants:
These grants provide direct financial aid to families to help cover essential costs like rent and other expenses alongside their child’s medical care. In addition the foundation provides funeral assistance grants to bereaved families, and the larger annual Butterfly Grant to an identified family going through extenuating hardship in caring for their child.
Care Baskets:
For families entering hospice, care baskets filled with comforting and necessary items help ease the transition during a deeply emotional time.
Birthday Boxes:
Customized birthday celebrations ensure that children in hospice feel valued and cherished, allowing them to celebrate every birthday in a meaningful way, alleviating the stress from the families.
Abbey House:
Texas’s first pediatric hospice/respite home, filling a critical gap in healthcare resources to families of medically complex children for respite and end-of-life care.
Valentine Teddy Bear Drive:
Collect teddy bears and deliver them to children who are in the hospital on Valentine’s Day.
Abbey’s Pink Santa:
Annual holiday giving program that assists families with medically fragile children through gift cards and stockings distributed by social workers to families identified.
Children need Hospice and Respite Care – Although a child-focused (pediatric) hospice would benefit children and families, currently, there are only 7 in the United States.
In the State of Texas there are approximately 85,000 children living with a life-limiting illness and of those 7,000 in Central Texas. So the need for a pediatric respite/hospice facility is crucial for these families.
Are there any apps, books, podcasts, blogs or other resources you think our readers should check out?
My faith is a huge source of strength for me, along with my family and friends. I also think about all the incredible children we’ve met along this journey—those who are no longer with us but whose spirits continue to inspire me every single day. Their stories, their smiles, their bravery—they remind me why this work is so important.
And then, I think about the families we help everyday. I see them in my heart—the parents who need a place like Abbey House, the children who deserve comfort and care. They are my motivation. They are the reason I pour everything I have into making Abbey House a reality.
Contact Info:
- Website: https://www.aekellerfoundation.org
- Instagram: abigailekellerfoundation
- Facebook: AbigailEKellerFoundation
- LinkedIn: abigail-e-keller-foundation
