Grace Rosian was born in October 2016 with a rare form of leukemia that only affects children with Down syndrome
A 17-month-old girl with Down syndrome is heading home after a lifetime battling two types of aggressive leukemia.
Grace Rosian was born two months premature in October 2016 and diagnosed with a rare form of blood cancer that affects fewer than one in 10 children with Down syndrome.
She was only two days old when she underwent her first rounds of chemotherapy at the Cleveland Clinic in Ohio.
The chemo was a success and Grace was sent home at two months old, but less than a year later it had returned as an even more dangerous form of leukemia with a 26 percent five-year survival rate, landing her back in the hospital.
Eight months later the baby dubbed ‘Amazing Grace’ is in remission again and has been given the green light to go back to her home in Strongsville, Ohio.
‘With everything Grace has been through, she’s always been a happy baby,’ Grace’s mom Valerie Revell-Rosian said in a blog post from the Cleveland Clinic.
‘I don’t think a single day went by that we weren’t able to get a smile out of her.’
Since Grace was born she and her family have only been able to spend five or six months at home.
Cleveland Clinic Children’s Hospital became a home-away-from-home for Grace, her parents and her older brother Robert, three.
The now 17-month-old has spent most of her life at Cleveland Clinic Children’s Hospital with her parents and brother Robert, three, shown left
Grace’s mother Valerie Revell-Rosian, left, said that the little girl has always been very happy and smiley despite the extensive cancer treatments
Grace was diagnosed with transient myeloproliferative disorder (TMD) at birth, a form of leukemia that exclusively occurs in children with Down syndrome, affecting four to 10 percent of newborns.
She was treated with chemotherapy and allowed to go home at two months old.
Less than a year later Grace was diagnosed with acute myeloid leukemia (AML) another cancer of the blood and bone marrow for which children born with Down syndrome are at a higher risk.
‘Although AML is a curable form of leukemia for kids with Down syndrome, their bodies are extremely sensitive to chemotherapy,’ Dr Seth Rotz, Grace’s pediatric oncologist, said in the blog post.
‘Grace was at such a risk for severe infections that she had to stay hospitalized throughout her treatment.’
Grace was born two months premature and underwent chemotherapy at just two days old
Grace is pictured eating cake at her first birthday party, which was celebrated in the hospital
Heightened blood cancer risk with Down syndrome
Children with Down syndrome are at a significantly higher risk of developing blood cancers.
Research has indicated that the heightened risk may be caused by an extra copy of a blood development gene called the Erg gene, which is a result of the extra section of DNA known as chromosome 21.
A study from Royal Melbourne Hospital found that reducing the functioning gene from three to the normal two could prevent cancerous blood conditions from developing.
The AML was also found in Grace’s spinal fluid, so chemotherapy had to be administered directly to her spine through 10 painful spinal taps over the course of the eight months.
She also celebrated her first birthday in the hospital.
‘On her pictures for her first birthday, it hurts my heart to look at them,’ Rosian told People.
‘We tried so hard to make it special for her, she was so sick. She looked so sick.’
On March 21, World Down Syndrome Day, the family was finally given the green light to take Grace home.
‘When I got the news that I could take her home, I was like: “I can breathe now,”‘ Rosian said.
‘It felt good but strange because most of my time with her had been at the hospital.
‘When I got to have her home, it felt good because now I can be the mom. I can be the mom 100 percent.’
Valerie said she intends to continue chronicling the family’s journey on a Facebook page called Fight with Amazing Grace Rosian.
Through the page she hopes to raise awareness for pediatric cancers, which receive only four percent of cancer research funding, according to the National Cancer Institute.
When Grace was finally given the green light to go home on March 21 the hospital staff cheered as she and her family checked out
Valerie said she is thrilled to have the opportunity to be a normal mom to baby Grace