Support Marissa & Family w Devastating Diagnosis

Greetings, I'm Angel, a dear friend of Marissa and her family. I've started this GoFundMe campaign not only to extend support to Marissa and her precious baby, Lavender, during this challenging time but also to shed light on Ataxia Telangiectasia.

Lavender's entry into the world was a magical experience, marked by Marissa's grace and presence. After around 10 hours of labor, she welcomed her first daughter into the world. After most births in a hospital or birth center, Midwives will prick the heal of the child to draw blood for blood tests. Usually, most mamas don’t hear a thing about it after giving birth… getting to go home peacefully and bask in the oxytocin of bonding with their new child. Marissa, unfortunately, did not have that privilege.

Approximately 11 days postpartum, Marissa grew concerned about Lavender's weight gain and returned to the birthing center. It was there that she received the unsettling news – Lavender's newborn screening had come back positive for SCID (Severe Combined Immunodeficiency). Although the exact diagnosis was initially uncertain, what was clear is that Lavender couldn't risk falling ill until further testing was conducted.

Since that day, Marissa and her family have been in isolation, anxiously awaiting conclusive results. Eventually, they learned that Lavender has Ataxia Telangiectasia, adding another layer of complexity to their journey.

Ataxia telangiectasia (A-T) is a rare genetic disorder affecting the nervous system, typically manifesting in early childhood. Individuals with A-T experience progressive difficulties with coordination and balance, often accompanied by immune system issues. The disorder is caused by mutations in the ATM gene. Life expectancy for those with A-T can vary, with some individuals living into their 20s or 30s, while others may have a shorter lifespan. Due to its low prevalence, A-T is considered a rare disease, affecting approximately 1 in 40,000 to 1 in 100,000 births. The rarity of the condition underscores the importance of specialized medical care, research, and awareness efforts to support affected individuals and their families.

They have decided all funds should go to costs for travel (they will be attending a ton of appointments) and hopefully visiting the A-T children’s clinic at John Hopkins to try to get some info about what her particular case could look like and possible treatments / trials to take part in.

This GoFundMe seeks to provide financial and emotional support for Marissa and her family as they navigate through the challenges posed by Ataxia Telangiectasia. Your contribution not only helps them cope with medical expenses but also plays a vital role in spreading awareness about this rare condition. Let's join hands to offer comfort and assistance during this difficult chapter in their lives.