Lillie's Journey with Batten's

Hello friends and family! It's Sarah and Brandon Brackett.

Recently, we received some life-altering news that our amazing, funny, strong, sassy but kind-hearted, beautiful girl was diagnosed with a rare genetic deletion called Batten’s disease.

What began with some severe changes and impairments to her vision, will become more serious health issues. While we don’t know exactly how the future will unfold, we know that most cases of juvenile Batten’s disease include progressing symptoms of muscle, speech, vision and cognitive loss (including memory and communication skills). This is a progressive, neurological, and heartbreakingly, life-shortening disease.

(update april-01-2025 her progression so far has added speech impediment, drastic central vision loss making her bump into things often,her seizures have started and as such things have become harder like going to movies, she also stutters often, and has a hard time describing things. we're expecting mobility break down in the next few years. and is now 11 years old)

(A sidenote: If you see us around town, please know that Lillie and Eli know very basic information about these health changes and challenges. Any in-depth questions or conversations can be had by phone, text or personal message.)

at 8 Lillie was her bright, alert, normal 8-yr old self and we are living each day as best we can. Knowing what could be ahead, we are hoping to give our family some amazing memories and some special experiences. Our initial hope is to be able to get financial help to take her on a couple trips to enjoy some quality time together.

We are also looking ahead to the likelihood of large medical bills, adaptations to our home and car, and necessary equipment to support our girl as her body changes and she’s able to support and care for herself less. She will be a “more expensive than average” kiddo.

We are doing our best to adapt our family finances, and we are grateful for the possibility of some help from various medical foundations, but help is uncertain and we feel the pressure of an unpredictable timeline in how Lillie’s health will change. While foundations could possibly help, it isn’t a given, and it’s often a slow process.

As specific needs come up, or needs are met with any donations here, we will share our updated needs as well as our deep gratitude.

There are no assumptions or expectations, but thank you for whatever support you offer: prayer, love, hugs, or $1. We are grateful for community and love from so many different places, in so many different ways.

Our love and gratitude,

The Bracketts

update Aug 2022. thanks to the 20k donated we sent Lillie to Disneyland and universal studios, a trip to Sacramento to uc Davis. and paid bills. thank you so much everyone for donatig, because of this we are making her shortened life so much more magical

UPDATE may 5-2023: Someone has donated Lillie a trip to Maui HI, however, the finances right now are tight so we are looking for donations to make the trip magical for her. the trip will be in early July, if you wish to donate to the trip and to our medical bills and hotel visits for her uc davis trips please donate! We appreciate Every cent we get more than you probably could understand! Thank you to all of those who have already given us so much. It has brought some comfort in this rough time. and thanks to a large donation we were able to pay for everything in HI

update may 2024

Lillie's make a wish granted her a trip to Disney world but due to fear of flights and long wait times to switch to la Disneyland we switched to Great Wolf Lodge and Lillie loved it. Lillie loved Hawaii last year but developed a fear of flying.

update April 2025

we wanted to still take her to Disneyland before she becomes incapable in the next few years. she has been asking to go. so we are hoping for donations to help support us in going. we are also wanting to purchase a van that can be upgraded for wheelchair access.