Together, we can help Uma eat, talk and walk!

As some of you may already know, our beautiful, almost three-year-old daughter, Uma has a rare genetic mutation called TUBB3, which affects her ability to walk, talk and eat. We need your help so we can finance the cost of her life-long treatments and we can provide our little princess a better quality of life!

What is TUBB3?

TUBB3 is a genetic mutation characterized by the lack of development in the corpus callosum (the nerve fibers that join the left and right hemispheres of the brain). This part of her brain was not developed at its 100% during gestation, her brain it’s not able to send signals to her larynx, vocal cords and a lot other functions of her body, causing her to make an extra effort while breathing, eating, walking, moving and seeing.

Right after birth, Uma had to be transferred to Houston Medical Center given the criticality of her condition and on Sep 2019 after spending a month in the NICU (Neonatal Intensive Care Unit) she had 2 surgeries, tracheostomy and gastrostomy.

Uma´s Journey

When Uma was born and we knew about her medical condition, we spent almost three months in the hospital. Every week there was a new diagnosis, a worry to kept us up all night or a joy that gave us hope. Those days were hard but with the support of our family and friends, we managed to stay strong… until we gradually prepared ourselves to take our beloved daughter home.

Today we are very happy because we see how much she has been developing thanks to her physical, language and occupational therapies. She show us every day that she has no limits. At her young age, she is already learning ASL (American Sign Language) and knows how to communicate her needs and wants, Uma is an extremely loving little girl, who loves hugs (especially the ones from her older sister Lua). Uma is a brave, intelligent and persistent kid and we know in our hearts that eventually she will be able to fend for herself.

The Treatment

Recently, we have discovered a laser therapy that has greatly improved the lives of children with similar conditions to hers. In most cases, this treatment has allowed the patients to walk. This therapy will also enable the doctors to take Uma’s trach out, meaning that our child will be able to eat for herself.

We have medical insurance, but unfortunately the cost for this treatment is not covered. As she grows, her treatments are getting more expensive and we often need to pay out pocket costs, however as a family of five, it has become very challenging to continue to afford.

We do not want to delay Uma’s progress due to economic restrictions, which is why we need your support!

How can you help?

It doesn’t matter how much you can donate to Uma’s cause, every penny counts.

Together we can make a difference in Uma’s life.

With your donations we can give this beautiful warrior the help her body needs to overcome this difficult situation.

We appreciate your care and support during this challenging times. We assure you that we are determined to help Uma achieve every milestone in this beautiful journey of hers.

Thank you for your kind help. God bless you all.

With love,

Lulis and Adrian.