Even just glancing at the two-word headline of the story in my inbox — Bella’s Journey — it was apparent this was going to be an emotional reading experience. Little did I know, it would be an uplifting one, too.

I feel blessed to have been told of Bella’s story and I wanted to pass it along to our readers. I think we can all learn lessons from this courageous 7 year old. The Elkhart, Ind., child is the great-granddaughter of Terry and Frances Pethick, of Niles, and has family across Michiana including her father, Jason O’Dell, of Goshen, and her stepfather, Nick Genovese.

So embark on Bella’s Journey, as shared below by her grandmother, Karen Harris, and Bella’s mom, Amber Genovese.

When little Bella O’Dell was just 3 years old she became very sick. A bone marrow biopsy showed that she had aplastic anemia, what is commonly called bone marrow failure.

This was the start of Bella’s Journey.

Bella received life saving blood and platelet transfusions weekly for almost a year. She also received immunosuppressive therapy while waiting to find a bone marrow donor match. She also received a few different modalities of treatments that miraculously caused a partial recovery and she was able to lead a fairly normal life for a while.

Bella has been very active in competitive gymnastics, cheerleading and dance since the age of 2. She is truly amazing and even when her blood counts are low or she is sick, she continues to go, do and be involved in literally everything.

Bella refuses to miss anything or be different.

Doctors do not know what this condition is or even what to call it. With her being so rare and the doctors not being sure exactly what they are dealing with, bone marrow transplant has been saved for the last possible alternative. They can no longer give us percentages on outcome of transplant. The doctors have nothing to base it on or which to compare.

Bella is a total mystery to the doctors and us all.

The closest disease doctors can link to this is Fanoconi’s Anemia. There is still no exact name for her type. She appears to be the first person to ever have this form.

In the last few months Bella has slipped back into total bone marrow failure. Having exhausted every other form of treatment, Bella will be having a bone marrow transplant this summer.

Bella is not allowed to participate in any of her favorite activities. A bone marrow transplant is risky even with a perfect match and, while Bella has found a good match, it is not perfect.

Normally, families have at least six months to prepare for transplant. Bella is being “fast tracked” and will be heading to transplant the second week of June. This makes it difficult financially on the family.

Her mother will be staying with her five hours away for about 6 months while her sisters and stepfather stay here. They will have to support two households. The family could use help with building supplies, as Bella will need to be isolated from her sisters for quite some time after transplant and will need her own room.

When Bella was told she would not be able to see her sisters, she asked for face time with them. When she was told she would not be able to participate in gymnastics, she asked for gym equipment in her hospital room. When she was told she would lose her hair, she asked for it to be dyed purple (her favorite color) before she loses it. She will be getting her hair dyed purple this Sunday.

As if the physical and emotional impact was significant enough, this ordeal has created significant hardship on the family, as outlined above.

But the community is rallying to support this young lady.

To help raise funds for the family during this time, Jimtown High School in Elkhart is hosting a 5K Run & 1 Mile Family Fun Walk at 8:30 a.m. Saturday, June 14. The event will include bounce houses, concessions and a bake sale. Tangles Salon in Goshen will be on site to put in purple hair extensions for anyone who wants to match Bella.

For more information and to download a registration form for the 5K, visit www.bellas-journey.com or see the entry form on the Giving page in today’s newspaper. Donations can also be made at Lake City Bank.

What makes Bella special? For her great-grandmother, the answer is very simple.

“Her Spirit! She has courage of the lion and is not a complainer,” Frances wrote via email. “When she had spent six hours receiving a six-hour drip of chemo-like drugs and getting home at midnight from that Ohio trip, she woke up in morning around 9 o’clock, got up and said to her Dad, ‘Where is everybody?’ He said at school and she said, ‘Well I’m going too!’ And she did.

“She got herself dressed and her Dad drove her to her first-grade class. And when a couple of weeks later she had a reaction from this drug and was hospitalized — and we thought we were losing her — she overcame it. A miracle. She pushes herself to compete in gymnastics, loves to dance and loves to cheer, and those girls travel singing all the way with her. She just does not want to be different and has so much life in her. Her smile and her bounce-back are amazing.”

Bella’s journey has been amazing, too. With prayers and perseverance, I have to believe it is far from over.

 

Michael Caldwell is the publisher of Leader Publications LLC. He can be reached at (269) 687-7700 or by email at mike.caldwell@leaderpub.com.