
Support Liam's Brave Battle with Batten Disease-CLN2
Donation protected
On January 3rd, my sister, Honor, and her husband, Joseph, received a call from Seattle Children’s Hospital about their 4-year-old son, Liam. Genetic testing revealed he has a rare disease called Neuronal Ceroid Lipofuscinosis Type 2 (CLN2), a form of Batten disease.
In other words, Liam's body can't produce a vital enzyme needed to break down and recycle certain materials in his cells. This leads to a buildup of harmful waste in his cells, causing damage until the cells eventually stop working properly, particularly brain cells and nerve cells. Over time, these cells die off, leading to various symptoms.
CLN2 is progressive and degenerative. Liam's symptoms include seizures, vision loss, difficulty with movement/mobility issues, and cognitive decline/learning difficulties. These symptoms will continue to worsen over time.
Liam's condition is terminal/life-limiting, and there is currently no cure. However, he's undergoing a new treatment requiring trips across the state to Seattle for brain infusions every 14 days indefinitely.
Life expectancy for children without treatment is generally around 6-12 years old. Liam will be 5 in June of 2024.
While the treatment Liam is receiving has been shown to slow the disease progression and extend life expectancy somewhat, it is not a cure.
Liam is a sweet little boy facing a tough journey, and the family hopes for community support to make his life as full and loving as possible.
Liam's new medical diagnosis comes with various costs.
The main concern is helping the family cope with expenses related to:
- Taking time off work for caregiving and spending quality time together while Liam still has his eyesight and ability to walk, run, and play.
However, other needs are increasingly important to support Liam as the needs arise.
Here's how your generosity can make a difference:
- Home Safety Essentials: Provide essential safety features like safety rails, bed alarms, wall and corner padding, and ramps to create a secure environment for Liam at home.
- Therapeutic Equipment: Help the family to acquire specialized equipment for Liam's occupational and physical therapy home needs, including balance boards, therapy balls, and sensory swings, to maintain his strength, balance, and coordination.
- Communication Devices: Enable Liam to express himself effectively by supporting the purchase of augmented and alternative communication (AAC) devices, allowing him to communicate through symbols and pictures.
- Special Needs Wagon: As Liam's mobility declines, a special needs wagon will be extremely useful for transporting him comfortably and safely, ensuring he can still participate in family activities with ease.
- Travel Assistance: Support Liam's family with travel expenses as they journey from eastern Washington to Seattle every other week for his medical treatments. Your donation will cover fuel, overnight stays, and meals, easing the financial burden on the family during these trips.
*Note: The Ronald McDonald House requires a 4-night stay, but Liam's infusions only require one-two night stays every other week.
To ensure transparency and responsible use of GoFundMe donations, Liam will have a separate bank account set up specifically for funds related to his care. Honor and I will be posting updates about Liam's condition on this GoFundMe page and the Facebook Support Group when she is able.
Please consider donating $5 or more if you can.
Thank you for your thoughts and prayers.
-Faith
Fundraising team (2)

Faith Odman
Organizer
Richland, WA
Honor Crawford
Beneficiary
Michele Crawford
Team member