Sharon's Walking Journey

WE ARE TRYING TO RAISE $7K USD TO COVER 3 NECESSARY SURGERIES
Stretch goal: $1K USD extra for ongoing treatments until 8 years old

Sharon Muñoz Morales was born on June 1, 2020 to young parents Eloy y Amairani who were taking care of our house at the time in Oaxaca, Mexico. When Sharon was born, there was a deformation of her right foot which was diagnosed as clubfoot; a commonly treated deformity that occurs in approximately one in every 1,000 infants. At this time, Voces de Guiraa’ committed to helping the family fund this surgery. At 15 months old, Amairani took Sharon to the hospital to get the process started for the clubfoot surgery and realized that the issue became a lot more complicated and expensive when she found out that she actually has a rare genetic disorder called isolated hemihyperplasia.

ESPAÑOL AQUI 

 

What We’ve Done

Voces de Guiraa’ has paid for and committed to the following procedures:

 

What We Need:

Operation #1 (Nov/Dec 2021)

Sclerotherapy surgery to stop the swelling by altering the blood supply to the foot. Sharon’s foot is continuing to grow at a different rate to the rest of her body, and is consuming almost half of her energy intake in the process. This has resulted in growth failure, and she is below average height and weight for her age. It is important that this surgery occur soon, both to stop the direct problems caused by the foot's overgrowth, and to redirect nutrients to the rest of her body, thus promoting proper growth and brain and organ development. Because of the rarity and technical complexity of the operation, experienced surgeons from Merida and Mexico City will be coming to Oaxaca to perform the surgery. TOTAL COST: $3K - $3.5K USD

 

Operation #2 (June 2023)

Epiphysiodesis surgery to the growth plates in the shin bone will need to be performed to try to minimise differences in growth rates across her two legs. This is an attempt to stop the ongoing growth of the right foot as she grows, and aims to ensure that her legs grow at similar rates so that her mobility is not affected. Depending on her overall growth, there is a chance that this surgery will need to be repeated at some stage to minimize leg length asymmetry, as in normal development growth plates at this site do not close until 12-14 years of age. First epiphysiodesis surgery TOTAL COST: $1.5K - $2K USD

 

Operation #3 (2024 – 2025)

Due to the overgrowth of this right foot, Sharon has had a delay in gross motor skills and at 15 months old is still unable to walk or crawl on her own. Once the process of overgrowth can be stopped, reconstructive surgery at 4-5 years old will hopefully allow her to walk! TOTAL COST: $1.5K - $2K USD

 

 

REACH GOAL: Ongoing Treatments after surgery

Recommendations from St. Louis Children’s Hospital Family Resource Center:

Children with hemihypertrophy have about a 5 - 10% chance of developing cancer in early childhood. For this reason, routine screening is so important, as it can help identify these cancers at an early stage! Wilms tumor and Hepatoblastoma, the most common cancers that result from hemihyperplasia, are very treatable forms of cancer if caught early. Cancers treated at an earlier stage will usually need less treatment and have a higher rate of survival.

TOTAL COST $1K USD

 

 

Advisory Council:

Dr. Luis Pacheco , Pediatric Orthopedist and Child Traumatologist, Mexico

Eugenie Batterby, Doctor, Emergency Medicine Registrar, Australia

Oloruntosin Adeyanju , Pediatric Hospitalist, USA

Charlene Burns, Family Nurse Practitioner, USA

Viridiana Pacheco, Licensed Communication Therapist, Mexico

St. Louis Children’s Hospital Family Resource Center , USA

 

MORE INFO:

What is Isolated Hemihypertrophy?

Hemihypertrophy is a genetic disorder characterized by overgrowth of one side of the body in comparison with the other. The overgrowth may affect only one part of the body, such as the legs. However, it may involve several different areas of the body including the arms, face, and tongue. Hemihypertrophy is “isolated” when it occurs by itself. But, it can be one of several characteristics of Beckwith-Wiedemann Syndrome (BWS) or another genetic syndrome. Sometimes hemihypertrophy is not apparent at birth but can become clear as the child grows.

 

What causes Hemihypertrophy?

The change is not caused by anything that a mother does during her pregnancy. There is nothing a parent can do to prevent the genetic change

 

If interested in continued support for children with disabilities in Mexico, visit www.vocesdeguiraa .com to read about our programs supported by other lovely people like yourselves.