Girl Losing Eyesight to Brain Tumor After Fulfilling 2 Wishes

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Scarlett Hellewell is only five years old but is facing a life of blindness due to a rare brain tumor called an optic pathway glioma, caused by a condition known as neurofibromatosis. Fortunately, through a little bit of lucky timing and weeks of fundraising from generous well-wishers, Scarlett was able to have two wishes fulfilled before completely losing her sight.

Scarlett, who is from Halifax, West Yorkshire, was diagnosed with the tumor last February. She is already completely blind in one eye and partially sighted in the other. Unfortunately, the tumor is inoperable due to the risk of damaging the optic pathway system, and Scarlett will eventually lose all vision.

An optic pathway glioma is a tumor arising from a type of glial cell called an astrocyte. These cells make up the supportive network of the brain. Optic pathway gliomas are tumors that occur in or around the optic pathway, such as on the optic nerve, the optic chiasm, or the optic radiations.

These types of tumors account for 5 percent of all childhood brain tumors. Most children are less than age five at the time of diagnosis. Children with neurofibromatosis type 1 are at increased risk of developing optic pathway gliomas, with 70% of those occurring on the optic nerve.

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An optic pathway glioma is generally a slow growing tumor, and symptoms occur for many months prior to diagnosis. Common symptoms in infants include abnormal head movements (head tilt), abnormal eye movements, or head bobbing. In toddlers, visual loss, abnormal eye movements and developmental delay are common.

In addition to losing her sight, Scarlett’s tumor has also affected her growth, making her big for her age. The hormone center of the brain is located in close proximity to the optic pathway and the glioma tumor. This system controls hormone production, salt and water balance, appetite and sleep. Children with optic pathway tumors have abnormal growth and/or endocrine dysfunction.

Fortunately, Scarlett’s mom Paula has been able to make two wishes come true for her daughter before her sight is lost. Shortly after her diagnosis, Scarlett told her mother that she was desperate for a younger sibling to look after. Paula gave birth to daughter Willow on May 7th of this year. Although the condition is hereditary, so far Willow appears to be okay.

Also, through generous donations, Scarlett and her family went on a two-week holiday to Cuba at the end of last year. Paula says, “Scarlett had an amazing time in Cuba. When we got there she just spent all of her time splashing about in the pool and the sea, it was great to see her smiling and enjoying herself.”

Because surgery is not an option, optic pathway glioma growth can be slowed with the use of chemotherapy and/or radiation therapy. Success of treatment is dependent upon the location and number of tumors affecting the optic pathway.

Related Story: Childhood Brain Tumor Survivors Left with Long-Term Impairments

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Comments

My daughter was diagnosed with the optic glioma when she was 8 months. the tumor was too big to remove but they just removed the bulk of it and then went on to having chemo therapy. she then had to have a shunt put in as there was pressure on the brain due to excess fluid build up. she then developed thrombosis ( blood clot). she is still doing hormone replacement therapy, and still has electrolite imbalance and she in now only 1. she has weakness on the left side of her body and has no sight in both eyes. we were also told that the brain parts on the left and right lobes simply does not exist, it just never developed, and thats the parts of the brain which control speech. still she cannot roll over sit or stand. they cannot tell me if its because of a nerological problem or if its normal, and they cannot tell me if she ever will do all these things. they say this tumor is slow growing, then how the hell did it get so big so quick??? at 8 months it was already 6cm by 4cm plus she has a watery cyst above it! how that all fit in her little head i dont know! I just want to know is there still hope that she will be able to talk, or at least sit??? And then they tell me she might have this NF1!!! we still waiting for the dna test results to come back. Im so happy to hear another story similar to my daughter! I really felt so alone in this battle!