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SPECIAL DELIVERY: The Birth of Showing Touch LLC

My niece Bella was the bravest angel on Earth. I met Bella July 13, 2017 just moments after she transitioned into the world. I was truly amazed by how calm, focused, and ready for the world her newborn energy was. Her mom had no pregnancy or delivery complications which made the birthing experience a breeze. Tremendously proud of my sister, I was beyond pleased at my new niece's long awaited arrival. Perfect in every way with the most gorgeous face, Bella was joy. Bella was love.

In a few short weeks after several high fevers and then seizures, it was discovered that Bella was living with a rare congenital disease called Hemophagocytic Lymphohistiocytosis (HLH). HLH in its primary form affects infants and children. Although rare, it's secondary form can be acquired in adults as a result of cancer or other serious conditions. HLH is not cancer, but is treated as such because it is highly disruptive to the body's immune functioning: the T-cells and NK-cells found in the system malfunction and attack the host. Instead of simply destroying infected cells within the body, an HLH patient's cells are overactive and cause inflammation in the body thereby damaging tissues, organs, and bone marrow.

In Bella's case, a six month prognosis was given with a bone marrow transplant deemed mandatory within that time to ensure a chance at life beyond that projected time. While waiting for a transplant donor, Bella fell ill and began her permanent stay at St. Louis Children's Hospital. Receiving around-the-clock care, it was truly a day by day process as a team of doctors and specialists worked to aid her back to health. For months, we hoped to find a donor from the National Bone Marrow Registry, but never got the call that a match had been found. Just before Bella was due to receive stem cells from her father to complete her bone marrow transplant, she slipped in renal failure on Jan 1 2018. At this point, along with the chemotherapy medication she had been on to control HLH, she also had to undergo routine dialysis at just five months old. Obviously, no one ever expects to treat such a young soul with powerful measures and advanced technology, so a recurring issue Bella had was her veins and arteries being far too small for the supplies available at a hospital that doesn't specialize in this condition. Countless procedures, surgeries, examinations, and revision surgeries made up Bella's weekly schedules. Yet no matter how hectic or stressful, her mother never left her hospital bedside, no matter which hospital floor they were living on at the time.

Bella's transplant was a success! Her body implanted the new stem cells and her body began improving in the levels that HLH directly affected, however things took a turn for the worse. Within weeks, she was diagnosed with heart failure and began comfort treatments. I had never seen so much medication and machines hooked up to any human, much less an 8 month old infant. It was beyond heartbreaking seeing her confined to a hospital bed for months on end, growing as normal but unable to sit up or coo or play. Yet despite all the chaos and complications, her spirit still spoke to me.

As I visited with Bella during what turned out to be on of her final days, I stroked the palm of her open, relaxed hand with my index finger. It had been several months since I had physically held her without worry but her spirit was was still as sweet and pure. Bella closed her hand with my finger still there and held with the tightest grip. Over 40 minutes had passed by the time she let go and in that time, her message to me was evident.

A couple days later, Bella suffered a stroke. It had to have been divine timing that I arrived at the hospital just as the doctor was coming in to share the MRI results. All I could think about was how much of a fighter she was and how incredible it was to have experienced all that she did with no major cognitive loss or damage, It was great news during such a huge battle and while we thought she would remain as a strong and gain stability, God had other plans. As usual, Bella was either faced with getting a new surgery or allowing her conditions to run their course. In the days following her stoke, Bella passed away as a result of surgical mishap during a dialysis catheter revision procedure. Still bedside during that moment- her mommy rushed over to hold her as only a mother could. A touch so pure. A love so limitless. She cradled Bella for two hours, then gave her a final bath, and placed upon her head one of her many hair bows from their large collection. Bella had become known on all hospital floors for her beautiful bows that changed as regularly as her outfits would have in a perfect world.

When I received the call early in the morning of March 20,2018 that Bella was gone, the first words I uttered were, "I've got to go to work-" while I rolled out of bed and rushed to be with my sister. I did not understand in the moment what I meant, nor was I referring to any job I held at the time; the statement sounded like sleepy words but the intention behind them felt so powerful to me. I recognized a healing opportunity when I met my sister at the hospital and then cradled her for days during bereavement. It was clear that there was indeed work to be done.

I spent the second half of 2018 relentlessly training to earn qualifications to make a difference. Among gaining Birth Doula and Postpartum Doula training, I became a Certified Infant Massage Instructor and decided to create Showing Touch LLC as a remedy to all the families who genuinely need extra support and relief from parenthood.

The aim for Showing Touch as a full spectrum perinatal experience is to show how deeply healing and powerful touch can be for mothers and babies- both independently and cohesively. Showing Touch also encourages strength within families and parents to provide an excellent foundation centered by love and a healthy, prosperous environment to aid in the highest development for every child.

Bella Beverly, HLH Warrior

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