Andrea Pelzer is an active, little dancer who loves both ballet and modern dance.
She used to be a national gymnast, lives in Durban, South Africa, and is well-
loved by her older brother and sister.
Andrea, now 13 years old, was diagnosed with Neurofibromatosis type 2 when
she was only 9 years old. She woke up one morning with the right side of her
face paralyzed. Since NF2 is such a rare disease, it took doctors two months to
determine the cause of the paralyses. This was a very fearful and anxious time
for Andrea and our family. When it was determined that Andrea has tumors on
both her left and right hearing nerves, as well as several other brain and spinal
tumors, it was a devastating day.
Very little is known about NF2 in South Africa. We only know one other adult
who has been diagnosed with NF2 in South Africa. Thus, it has been a very
difficult, and at times lonely, journey for our family. NF2 Biosolutions has
connected us to both hope and a community of caring and committed people.
When Andrea was first diagnosed, we consulted with local doctors in South
Africa, and while everyone was very interested in her case, they did not know
much about NF2. Andrea was due for surgery with a local neurosurgeon in 2016
who thought it would be best to remove the tumors as soon as possible. But a
week before surgery, Andrea tested positive for a bleeding disorder called Von
Willebrand, and the operation was cancelled. Due to the complexities of both
NF2 and the bleeding disorder, we were told that no doctor in South Africa
would touch her.
For the last 18 months, Andrea has been monitored by a top NF2 specialist at
Massachusetts General Hospital (MGH), the original and largest teaching hospital
of Harvard Medical School and a biomedical research facility located in Boston.
Although it is financially challenging to consult with doctors in a country where
you don’t have any medical insurance, especially in the United States, our family
will do whatever it takes to continue consulting with the best doctors in the
Unfortunately, consulting is all that is possible at the moment, since there is no
cure for NF2. Our only options for slowing down this deadly disease are electing
for life-threatening brain and spinal surgeries or chemotherapy. These
treatments are not a cure but only suppress the tumors and have long-term
negative effects.
In the last three years, Andrea’s tumors have doubled in size, and one is already
touching her brainstem. Although she is still doing really well with no hearing
problems or balance issues – both symptoms of NF2 – we are desperate for a
cure. Without a cure Andrea’s tumors will continue to grow and damage her
We have now come to the realization that our only hope for a cure is in gene
therapy. This method has had success in combating other rare genetic disorders
as it has the potential to help correct the faulty gene in NF2 patients. However, serious and continuous research and testing needs to be done. Neither is happening right now, but we are hopeful that NF2 Biosolutions will help to lead
the way and find a cure for our daughter.
As parents, we want to dream about our daughter’s future and give her the
future that she and other NF2 patients deserve. As the NF slogan says: “Never
Give Up.” We hope you will join us in fighting for Andrea’s future.

Donate to NF2Biosolutions in honor of Andrea

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