A Family is Raising Funds for an Experimental Treatment for Daughter’s Neuroblastoma

3-year-old Ava Bolton has always been bright, vivacious, and gregarious. So her parents Natalie and Scott were understandably worried when, near her third birthday, Ava’s affect seemed to change. According to the Scottish Sun, Ava became withdrawn and lethargic. Her parents noticed that her skin was paler than normal. Paired with frequent vomiting, facial bruising around her eyes, and leg pain, Natalie and Scott knew that there was an issue. What they didn’t know is that they would soon learn that their daughter had a rare cancer called neuroblastoma.

It took some time to get to this diagnosis, especially because Ava was initially misdiagnosed. Doctors thought that Ava had Transient Erythroblastopenia of childhood (TEC), a disorder in which the bone marrow stops producing enough red blood cells. Children with TEC develop anemia. However, TEC – which often develops following a cold or viral infection – usually resolves on its own within a few months. Natalie and Scott were initially ecstatic; their daughter would recover.

But to ensure that they hadn’t missed anything, doctors decided to run a few more tests and scans. Through this, doctors discovered that Ava did not have TEC. Instead, she had stage IV neuroblastoma. The initial tumor had formed on her back, but the cancer had spread. Additional tumors were found in Ava’s shin, pelvis, hip, and shoulder. Treatment began immediately: chemotherapy, blood transfusions, stem cell and bone marrow transplants. In the future, Ava is also scheduled to undergo radiotherapy.

Doctors told the Bolton family that Ava was at high risk of relapsing even after treatment. The Memorial Sloan Kettering Cancer Center is currently working on an investigational neuroblastoma vaccination designed to reduce or completely stop the risk of relapse. Ava’s family has now launched a GoFundMe to raise the necessary funds for treatment and travel. They have noted that any funds raised that do not go towards treatment will be donated to further neuroblastoma research.

If you would like to donate and help the Bolton family, you may donate here.

What is Neuroblastoma?: An Overview

Neuroblastoma is a rare cancer that begins in immature nerve cells found in several different areas of the body. Since adrenal glands have similar biological origins to nerve cells, neuroblastoma tumors often begin in the adrenal glands. Other places where these tumors may be found include the abdomen, spine, chest, and neck. Although neuroblastoma is rare, it makes up around 70% of pediatric cancer cases. It is most common in children aged 5 or younger and occurs slightly more often in boys than girls. Symptoms vary depending on which part of the body is affected. Potential symptoms may include:

  • A mass in the abdomen, chest, or neck
  • Dark circles (reminiscent of bruising) around the eyes
  • Stomach pain
  • Bone pain
  • Bulging eyes
  • Appetite loss
  • Wheezing
  • Limited mobility near the affected body part
  • Irritability
  • Painless, bluish lumps under the skin (in infants)
  • Abdominal distention (in infants)
  • Difficulty breathing (in infants)
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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