TWO-YEAR-OLD ELEANOR FACES A LONG ROAD TO HEALING AFTER OSTEOGENESIS IMPERFECTA LEFT HER WITH SEVEN FRACTURES AT BIRTH

“More proof.”

Those were the two words that left a mother heartbroken after months of fighting for the care her medically complex daughter desperately needs.

For the past six months, Tasha Johnson has shared the journey of her two-year-old daughter, Eleanor, a little girl born with osteogenesis imperfecta — a rare condition that makes her bones extremely fragile.

Eleanor entered the world with seven fractures already affecting her tiny body, and she has endured more since.

Now, the smiling little girl pictured above is recovering after major cervical spine surgery and living in a halo as she continues her long road to healing.

Her mother had hoped home healthcare would provide some much-needed support while she safely cares for Eleanor. But Tasha says Alabama Medicaid denied the request, asking for additional proof that her daughter requires the level of care requested.

The news left her devastated.

Tasha says the family had already submitted more than 250 pages of medical records.

“What exactly do you need me to prove?” she asked.

For Tasha, caring for Eleanor is not something that can simply be handed over to a babysitter or daycare. Her daughter requires constant, specialized attention, and that responsibility ultimately meant giving up a career she loved.

“I did not stop working because I didn’t want to work,” Tasha explained. “I stopped because my daughter needed me.”

The home healthcare request was never about convenience. It was about giving a mother some support while caring for a child whose medical needs have shaped nearly every part of their lives.

Tasha has already fought to get Eleanor the treatment she needed, including fundraising and traveling to Atlanta for the major spinal surgery doctors said was necessary.

And now, she says, another fight has begun.

She plans to keep gathering medical documents, seeking additional physician statements and appealing the decision if necessary.

But behind her determination is a mother who admits she is exhausted.

“I am tired of proving that a medically complex two-year-old with brittle bones, who just underwent major cervical spine surgery and is currently living her little life in a halo, requires help.”

Still, through everything, Eleanor keeps smiling.

That smile tells only a tiny part of her story.

Behind it is a little girl who has already endured countless challenges in her first two years — and a mother who continues to stand beside her, one difficult day at a time.

For Tasha, the fight is far from over.

She simply wants her daughter to receive the care and support she needs to keep moving forward.

Source: Gofundme

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