Lani’s Story

Site created on March 12, 2024

Over the years, we've watched our daughter, Lani (10), diagnosed with Dock8 deficiency, bravely battle through severe food allergies, clinical trials, skin conditions, and various illnesses. Despite the hurdles, our family has remained steadfastly positive, drawing strength from Lani's unwavering resilience and infectious positivity. 


Despite our best efforts with preventive measures, including antibiotics and IVIG infusions, it became increasingly clear that a more definitive solution was needed. Navigating the maze of consultations and options, we found ourselves at a crossroads when considering a Bone Marrow Transplant (BMT). After careful consideration and discussions with medical experts, we decided to proceed with the transplant at the National Institutes of Health (NIH). The expertise and specialization offered by NIH in Dock8 deficiency gave us confidence in this choice, despite the uncertainties that lay ahead. One of the most significant decisions we've made in this journey is my role as Lani's donor for the transplant. Knowing that I can play a part in potentially securing her future health fills me with a sense of purpose and determination. 


As we prepare for the transplant this summer, I am filled with a mix of emotions – hope, fear, and unwavering love for Lani. The road ahead will undoubtedly be arduous, filled with medical procedures, uncertainties, and emotional challenges. Yet, amidst it all, Lani's resilience and infectious positivity continue to inspire us. In the face of adversity, we lean on the support and prayers of our community, finding peace in the knowledge that we're not alone in this journey. Together, with #AlaniBears, we are united in our determination to give our daughter the best chance at a healthier future.

Newest Update

Journal entry by Ashleigh Walter

Yesterday, we had a virtual doctor’s appointment for Lani regarding fertility preservation, and we’re grateful for the insights gained. Learning about the benefits and success stories of this procedure was eye opening. We learned of the 200 babies born from other girls that have done the same procedure. As many of you know, Lani loves to play with dolls and looks forward to having kids of her own one day. By moving forward with fertility preservation we hope to bring that possibility closer. She’ll undergo a procedure to have an ovary removed and stored until she’s ready to start a family.

In other news, we’re excited to share the date for our Make-A-Wish trip! April 14-20, we will be heading to a resort in Orlando for a special experience before Lani’s bone marrow transplant this summer. We’ll spend time at Disney, Universal, and Discovery Cove to swim with dolphins. We’re deeply grateful for this opportunity to create lasting memories.

Thank you for your ongoing support.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Lani Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Lani's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top