My name is jonaih and I have Barth Syndrome

We have set up this fundraising page for our precious baby boy, Jonaih Hernandez. After being admitted in October and initially diagnosed with cardiomyopathy, we later discovered that Jonaih has Barth Syndrome, a rare and life-threatening genetic disorder. Jonaih will be spending a significant amount of time meeting with various doctors and specialists as he battles this condition. Due to his weakened immune system, he is unable to attend daycare, which means I, as his primary caregiver, have had to take time off from work, causing financial strain.

Our goal is to raise enough funds to ease the financial burden we are facing. Additionally, we hope to raise extra funds to help alleviate the stress of the countless doctor appointments Jonaih will have to attend. In July, Jonaih will be attending the Barth Syndrome conference, where we will have the opportunity to meet with doctors and other families affected by this illness, allowing us to gain a better understanding of it and find the best possible care for Jonaih.

We are immensely grateful for the support we have received from our community and are thankful for your continued prayers. While Jonaih's diagnosis is challenging, we remain hopeful that with the right medical care and support, he can lead a fulfilling life. We are determined to do everything in our power to help Jonaih thrive and appreciate all the love and encouragement we have received during this difficult time. Thank you for standing by us as we embark on this new journey with our son.

For more information on Barth syndrome please visit the Barth syndrome foundation website https://www.barthsyndrome.org