Lana Smiles

For: Lana Shelton, Laura Goodman Shelton, Don Shelton
Chicago, IL
Organizer: Erika Goodman Osborn
$13,185
of $10,000 goal.
Raised by 165 donors
100% Complete
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The Story

Little Baby Lana was born a fighter! She's the most precious little baby girl and is just loved by so many. After her 4 month check up Lana's pediatrician wanted her to go visit Lurie's Children's hospital to get some tests done because of some regression in her development.

On Thursday Nov. 17th the team of neurologists at Lurie's Children's Hospital diagnosed Lana with leukodystrophy. It was later confirmed that her type of Leukodystrophy is Krabbe disease.

The leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient.

There's no cure for Krabbe disease, and treatment focuses on supportive care. Krabbe disease affects about 1 in 100,000 people in the United States. It is also known as globoid cell leukodystrophy.

Funds raised will be used for supportive care not covered by insurance and all other medical costs associated with Lana's care.

Fundraiser Updates

Posted on December 15, 2016

Posted on December 15, 2016

We are thankful for ALL of the generous supporters those that know and love LA & Don and some that don't. Amazing the incredible support---we are overwhelmed. We are just $1505 from our goal!? WOW! WOW! WOW!

Wanted to send you all an update Lana's meeting last week with therapists from LA:

Because of Lana's diagnosis, she was automatically eligible to receive Early Intervention Services, which both her neurologist and pediatrician recommended. On Thursday, December 8th, the Early Intervention Team came out to evaluate Lana to determine what ongoing care would be appropriate. The Early Intervention team consisted of a physical therapist, occupational therapist, developmental therapist, speech therapist, and a social worker. It was determined that the main goal is to assist with getting Lana comfortable so that she can do things as simple as grabbing a toy or maintaining eye contact. There was also an Early Intervention Service Coordinator present who will assist with finding the local ongoing therapists for Lana along with conducting an Individualized Family Service Plan (IFSP). The EI Team, Don and I determined that Lana will definitely need a physical and occupational therapist that will conveniently come out to our house once a week for an hour.

We also decided that a Developmental therapist would be beneficial to come out twice a month. Developmental therapists do not address one specific area but instead look at a child GLOBALLY (e.g., cognitive skills, language and communication, social-emotional skills and behavior, gross and fine motor skills, and self-help skills.). Developmental therapists assess a child's global development and identify specific areas of need and areas of strength. They will then develop play activities designed to help a child overcome their challenges and improve the quality of their interactions in order to help them gain confidence in their own ability to learn and to acquire typical skills.

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