In January 2025, our sweet Luke finally received a diagnosis that has had the family pivoting and reimagining how to do life. Luke has a genetic condition called XLID98, more on that further down. I am starting a GoFundMe account for Luke’s family as they navigate life and the medical world for the rest of Luke’s life. Luke regularly attends PT, OT, Speech, Nutrition therapy, GI appointments, and varieties of other medical appointments.

Coming up in 2 weeks, Luke will have surgery to place a feeding/G-tube in. One of the common issues among XLID98 patients is “Failure to Thrive”, which Luke has had since birth. In three short years, he has gone from eating a few food items to less than 3 items. Chicken nuggets and fruit loops has been his latest safe food! The Nutritional therapist and the GI doctor both feel that it is time for Luke to have the G tube put in to help him thrive.

Luke’s family needs support in all ways. First, we ask you for prayers to surround Luke and his parents, David & Caroline, and his siblings Hayes and Isla. We ask for good vibes, positive thinking, and messages of support. Financial costs do add up when you factor in non-paid time off from work, multiple trips (gas) to therapies, medical appointments and hospital stays, care for his siblings, meals on the road, and living/medical expenses.

For full disclosure so that everyone knows who is responsible for getting your donations (minus the fee GFM retains) to Luke’s family, my name is Lara Siffer, and I am Luke’s grandmother, and David’s mother. David’s banking account information is added to this account, so we can deposit all your contributions directly to David & Caroline to use as they need. Please understand that they will be using this for their family as many needs arise during this time, and it will be at their discretion.

More on XLID98: X-linked intellectual development disorder 98 (XLID98) is an ultra-rare genetic neurodevelopmental disorder caused by NEXMIF gene mutations (sometimes referred to as KIAA2022 gene). This gene plays a critical role in brain development by helping neurons grow properly and form connections. Luke is one of 301 known individuals in the world (at least 38 countries) living with XLID98. Research and understanding around XLID98 is still slim. We are hopeful that over time research will manifest into potential treatments. We do know that it may cause intellectual development delays, autism spectrum disorder, and epilepsy, among other symptoms. XLID98’s extreme rarity creates unique challenges for families. Both Caroline and Lara have been getting more involved in the XLID foundation and are increasing awareness in our community. We will continue to fight for research and support. Visit xlid98.org for more information.

Thank you for your for your prayers, support, positive messages, and contributions.