Hi,

 

My name is Joyce Jones, aunt to sweet 9 week old Violet Fitzgerald who has just been diagnosed with SMA (spinal muscle atrophy) Type 1.

 

My sister, Brooke Fitzgerald, had an uncomplicated pregnancy and delivery, and Violet had a normal healthy newborn exam. When Violet was around 4 weeks old our family noticed strange positioning of her arms and less movement generally than other newborn babies.

Danny and Brooke took Violet to the pediatrician who after an extensive exam sent off a neurologic panel for muscular genetic disorders, just in case. In the Cayman Islands (and a lot of other places) they don’t test for SMA at birth and the general genetic

NIPT test done during early pregnancy also does not test for SMA. There was no way for Brooke and Danny to know they both carried this gene. Being born with symptomatic SMA is 1/10,000, so we hoped Violet could not be that unlucky.

 

After a heart wrenching two week wait for the test results, she came back positive for SMA type 1, the most severe type of SMA with the worst prognosis and life expectancy.

 

We were shocked, heartbroken, and suddenly mourning the future life that we imagined for baby Violet at less than two months old. But there wasn’t any time for emotions, she needed to get treatment as soon as possible and we had to figure out how, as the recommended treatment is not offered in our home country (Cayman Islands).

 

Zolgensma is the treatment of choice, a one time infusion that gives her some of the SMN gene that she is missing, allowing her muscles to have some movement. It is not a cure, but if treated early enough in the disease process, some of the babies with SMA can eat, breathe, sit, and maybe walk one day. Then we found out that Zolgensma is very, very expensive.

 

Violet's private health insurance declined Zolgensma as gene therapy is excluded from their policy. The insurance company also explained that they don't offer full coverage to SMA patients, so for the rest of her life they will only cover a portion because of her diagnosis. Amazingly, our government was able to support her financially for the infusion and fingers crossed, she will get Zolgensma this month. She needs this treatment as soon as possible in order to hopefully stay off of feeding tubes and ventilators for the rest of her life.

 

We will need a lot of financial support to continue to help our sweet baby Violet through this treatment process and give her a chance at living a life with quality. We don't know exactly how she will respond to this treatment or what her future prognosis will be. She may need a lifetime of physical, occupational, and feeding therapy, braces, travel expenses back and forth to the US, and possibly supportive containers/chairs, feeding and breathing equipment....and the list goes on. Danny, Brooke and Violet will need any support you can offer.

 

Please donate and please share as much as possible.

 

Thank you from the bottom of our hearts,

 

Violet’s family

Laura Fitzgerald, Danny's mother, Brooke's mother in law, Violet's sweet Granny will be withdrawing the funds and then sending those directly to Danny and Brooke to help fund Violet's medical bills.

https://www.instagram.com/fightforviolet/