We’ll be posting updates here about Ben and the family’s needs as the situation evolves. Please sign up for email updates as this is the best way to stay in touch and connected.
HOW YOU CAN HELP:
Join the collective strength and generosity of Matt and Katie's amazing community to help in any way you can. As their situation evolves, needs will be posted here. Please check back periodically.
From Matt and Katie: We believe with all our hearts in the power of prayer and in the value of reaching out to God for His grace, mercy, and goodness to see us through this journey of heartbreak and anguish we find ourselves the midst of. Please pray for sweet times together for our family, with our extended family, and in our friendships. Pray for incredible days for Ben because he is, after all, an 8 year-old boy who still wants to run and jump and play. Pray for his comfort and peace for he too is on a path that is unimaginable and taking everything from his beautiful life. Pray for moments, pray for Ben's quality of life, pray for his life to be extended, pray for a miracle. We covet any and all of your prayers, every minute of every day.
Encouragement & Stories:
Let’s create a virtual scrapbook! Have pictures? Post them. What do you love about Ben? Let’s hear it! Words of encouragement? Matt, Katie and Luke would love to hear from everyone. Click on the Post link in the navigation!
Help with Food:
We’d like to make the day-to-day easier on the family by helping with the daily tasks so Matt and Katie can spend as much time as they can with Ben. Provide a gift card to Raley’s, Whole Foods, Amazon, Brewers Cabinet, Eclipse, Wild Garlic, Bangkok Cuisine, Bab, Sup, Greatful Gardens, Laughing Planet or Jus - that is also very helpful!
Dietary restrictions are limiting broad involvement in meal delivery. Thank you for understanding.
Medical and related expenses will likely be significant. We would like to raise enough funds to offset those expenses. Certainly all of our situations are different, so please know that every little bit helps. Thank you in advance for your generosity! Click here for the donations page.
Initial discussions of a fundraiser are in the works. We’ll keep everyone updated as it starts to take shape.
Matt and Katie want to be completely transparent in communicating that any money remaining will be donated to an organization (yet to be determined) working to find viable treatments for rare genetic diseases like X-Linked ALD.
Stay in Touch:
Please sign up for email notifications to keep up-to-date on the journey. Send encouraging cards and letters to 2161 Westfield
Reno, NV 89509.
Ben’s amazing energy and mile-wide smile is unstoppable. Even as the ALD progresses, stealing his vision in the last month, he is going on tandem rides with Matt, doing front and back flips on the trampoline, swinging on the Ultimate Rush, riding quads, and playing with is new dog SPIKE! His wonderful teacher at Mountain View Montessori is working with him daily. While Ben's quality of endures, he will experience and celebrate the wonder of his family, his friendships and the adventures that make our lives so sweet.
With all of our love,
Loving friends of Matt, Katie, Luke & Ben, Jim & Andi, Fran & Lynnie, Jim, Lora & Lola, JP, Fong, Brooklyn & Sydney