Alexander's Great Fight to Raise Awareness About Kleefstra

Family, Friends, and the open community,

We are humbly starting this fundraising request because we are in an overwhelming situation that we never imagined would be our story.

We are newlyweds that have always dreamed about becoming parents. When we felt ready to start our family, we started discussing all the ways we would make great parents and foster values like independence, motivation, faith, and courage in our future children. We were so excited and were blessed to become pregnant on the first try! With gratitude, both the pregnancy and labor felt very easeful, smooth and divinely aligned. To our surprise, things took a turn when our son Alexander was taken into the NICU immediately upon delivery. It's been over 2 months and he has not been released. The doctors are unsure when he will be able to come home due to the many complications he has faced since coming into this world. This has been a long and arduous journey for us.

Alexander was diagnosed with a rare genetic disorder called Kleefstra syndrome that affects less than 1000 people in the US. This syndrome is significantly affecting his immediate quality of life & has the potential to impact his long term well being in a multitude of ways.

Our son is currently presenting symptoms of heart failure due to a hole in his heart. He has been resuscitated while in the NICU which has been the scariest experience we have ever had to face. A heart surgery may be the only way he comes home safely, but his medical journey may not end there. With his diagnosis of Kleefstra syndrome, his outcome is a big unknown. This syndrome has a wide spectrum of conditions that affects a child's development and impacts many bodily systems. We believe in the power of faith and community as blessings that can help get us through the storm.

This news has felt devastating to us in many ways but we have recently gotten clear on how we will turn it into a blessing. There are multiple ways we wish to use Alexander's story to help many children like him and with your help in raising the funds, this vision can be accomplished. We have committed to divide the donations gathered on this platform into three ways to support our son and the families & children who are undergoing a similar experience.

The First Way is by donating one third toward research foundations that are dedicated to Kleefstra syndrome and other gene therapy related research.

The Second Way is donating a third to be set aside to assist families that are affected by Kleefstra Syndrome.

The Third Way is by raising awareness through various means.

Saving lives is expensive. Alexander and other children like him deserve the chance that recent genetic breakthroughs now offer. We CAN save children's lives together!

Please HELP US as we fight to clear a brand new treatment path for many more children like Alexander!

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YOU can help pave a brand new path to saving children's lives!

1) GIVE whatever you can. No donation is too small (tax-deductible)

2) SHARE on social media (#AlexanderSaves)

3) SHARE this page - gofundme.com/alexandersaves - to your family + friends + community