HOPE FOR HODA

Written by: Adriana Carolina, a HODA caregiver

Angelica is a wonderful child, who at the age of 7, had a discovery that would change her life forever, after a simple headache (1 bleed), with evolution in 20 days to gait deviation, strabismus and vomiting (2 bleeds), had the discovery of a 3 cm cavernoma located in the bridge. Due to the bleeding and size, the only choice was surgery (04/28/2021) through the Unified Health System, which resulted in many sequelae, leaving the hospital quadriplegic, but alive.

After being able to get off tube feeding, she had a worsening of her condition and was unable to urinate, returning to the ICU, where a picture of hydrocephalus was discovered, and PVD was placed. After 6 months of surgery I noticed a tremor in the palate, along with nystagmus, ataxia and spasticity, which I already had. After 2 PVD changes, the last surgery performed was a third ventriculostomy, which showed great improvement in the clinical condition. To perform this surgery, a magnetic resonance imaging was performed which showed bilateral olivary degeneration, when I searched on the internet I found HODA, when I saw the symptoms I noticed that Angelica had them all. I started to follow American groups to understand a little of a situation that doctors do not give much importance to, I believe because it is rare and little studied.

Today Angelica is totally dependent on us, nystagmus and ataxia hinder rehabilitation a lot, she has strength, but she doesn't have the balance to stand up, she does a lot of therapies, she has a twin sister and an older sister, my husband and I work and try to lead life in the best possible way, facing adversity.

Angelica has always been a fun, determined and happy child and remains so, with hope for better days.

As a mother and pharmacist, I believe in science and God, I see a promising future with stem cells and robotics applied to health.

As long as there is life, there is hope, and God always puts the right people in our path.