Sunday, February 13, 2005

MLD Foundation - Support for Families With Metachromatic Leukodystrophy (MLD)

MLD Foundation - Support for Families With Metachromatic Leukodystrophy (MLD)

P.S. Please Excuse The Mess!

Please Excuse The Mess!

Hi,
I am in the process of working on this blog. It was my intention that my first posts started at the top of this page, and not at the bottom, I hope to get this corrected soon.
Please bear with me.
- Jamie
P.S. Todd is my 2nd cousin, his mother: Bobbie & I are first cousins, our fathers were identical twins.
I hope this blog will bring about a greater awareness for this disease.
My other blogs: http://odinslair.blogspot.com/


Todd at zoo 2 Posted by Hello

Todd at zoo 3 Posted by Hello

Todd at zoo Posted by Hello

Disney trip2 Posted by Hello

Todd's class picture Posted by Hello

Disney trip 1 Posted by Hello

Funny Todd & 2 Mrs. B's Posted by Hello

Todd & Mrs. Boekel Posted by Hello

Todd at Zoo 1 Posted by Hello

Todd kissing Mrs. Boekel Posted by Hello

Todd & Fireman Posted by Hello

2 Mrs. B's & Todd Posted by Hello

fireman Todd Posted by Hello

Please Excuse The Mess!

Hi,
I am in the process of working on this blog. It was my intention that my first posts started at the top of this page, and not at the bottom, I hope to get this corrected soon.
Please bear with me.
- Jamie

Original Todd Daniels Web Page

The Original Todd Daniels Web Page
About the WebDesigner:
My name is Mike Potter, I am a Sr. Staff Consultant for Verizon and by no means a web designer.
After reading and responding to a post created by Jamie on the techtv forums,
I offered what assistance I could provide for Todd.
I am proud to help in any way I can.
*******************************
I want to thank Mr. Potter for all of his help, especially with the domain name registration, etc... . His help won't be forgotten, and may God bless him and his family.
- Jamie
my new Todd Daniels blog

show your support

show your support

eMedicine article

eMedicine Article

University of Maryland Medical Center Article

University of Maryland Medical Center Article

United Leukodystrophy Foundation: The leukodystrophies are = genetically determined progressive disorders that affect the brain, = spinal cord and per

United Leukodystrophy Foundation: The leukodystrophies are = genetically determined progressive disorders that affect the brain, = spinal cord and peripheral nerves. The term leukodystrophy derives from = the Greek words "leuko" meaning white and referrin

Australian Leukodystrophy Support Group Inc

Australian Leukodystrophy Support Group Inc

NORD Article

NORD Article

MLD Foundation - Support for Families With Metachromatic Leukodystrophy (MLD)

MLD Foundation - Support for Families With Metachromatic Leukodystrophy (MLD)

The Myelin Project: An Overview

The Myelin Project: An Overview

Todd Daniels Benefit Ride hosted by TRU-RYDERS MOTORCYCLE CLUB OF JACKSONVILLE

Todd Daniels Benefit Ride hosted by TRU-RYDERS MOTORCYCLE CLUB OF JACKSONVILLE

Todd Daniels needs and gets community support by First Coast News | Local News

First Coast News | Local News: "Todd Daniels needs and gets community support"

First Coast News Report

Hi-Speed Video Clip

Lo-Speed Video Clip

Todd Daniels Support Fund

If you would like to help you can write a check to Todd's School in his name.
Or, you can call the school for more information. Here is that information:

Todd Daniels Support Fund
C/O Sugarmill Elementary
2885 Winding Road
St. Marys, GA 31558


Phone: 912-882-8191

Metachromatic Leukodystrophy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

Metachromatic Leukodystrophy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

A Little about Todd's Parents

A Little about Todd's Parents
My name is Bobbie Daniels and I am Todd's mother.

Todd's dad, Doug and I met at a high school basketball game in 1988. We were rivals. I was a junior and Doug was a senior. We started dating.

Doug graduated in 88 and started going to college. In the spring of 89 he went into the Navy.

I graduated in 89 and we married in Sept. of 89. Doug and I were stationed at La Maddalena, Italy for 2 years. I came home in 91 to have my daughter Whitney. Whitney and I then went back to Italy till October 1991. We then transferred to Charleston, South Carolina till June 93. From there we were in Orlando, FL till June 96.

Description of Metachromatic leukodystrophy

Description of Metachromatic leukodystrophy.

Reference: National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/index.htm

Metachromatic leukodystrophy (MLD) is a genetic disorder caused by a deficiency of the enzyme arylsulfatase A. It is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering -which acts as an insulator - on nerve fibers in the brain. There are three forms of MLD: late infantile, juvenile, and adult. In the late infantile form, which is the most common, onset of symptoms begins between ages 6 months and 2 years. The infant is usually normal at birth, but eventually loses previously gained abilities. Symptoms include hypotonia (low muscle tone), speech abnormalities, loss of mental abilities, blindness, rigidity (uncontrolled muscle tightness), convulsions, impaired swallowing, paralysis, and dementia. Symptoms of the juvenile form begin between ages 4 and 14, and include impaired school performance, mental deterioration, ataxia, seizures, and dementia. In the adult form, symptoms, which begin after age 16, may include impaired concentration, depression, psychiatric disturbances, ataxia, tremor, and dementia. Seizures may occur in the adult form, but are less common than in the other forms. In all three forms mental deterioration is usually the first sign.

Todd Daniels and Metachromatic Leukodystrophy

Todd's Story by Bobbie Daniels

Todd was born Feb. 2, 1998 in Jacksonville, FL. He was a perfect, healthy boy. The family moved to Virginia Beach/Norfolk, Virginia in Dec 1999. During this time Todd was diagnosed with Dysarthria. Which is an oral motor delay. He did not talk till he was about 3. After receiving speech services from the school system, they said he was developmentally delayed. In July 2002. We transferred to KingsBay, GA. When I signed up Todd for Pre-K. They did all his testing and evaluations for a new IEP. That is when the physical therapist and occupational therapist noticed he did not like using his left side. Todd also walked a little funny because he has flat feet. So Todd's pediatrician sent him to an Orthopedic Doctor to get checked out. That doctor said he was fine bone wise and if he had to diagnose him it would be with Cerebral Palsy. Well this was in Nov. of 2002. He referred him to an Neurologist. We could not get an appt. till Feb. 2003. During this time Todd started wetting the bed, having accidents during the day and was falling a lot. The pediatrician called them and said hey, we really need him to get seen. Well they could not get him in earlier so they scheduled him for an MRI before the appt. So, they did a brain and spine MRI before his appt. When we saw the Neurologist he had the results from the MRI. He said that the brain MRI came back positive and he would have to get with a few more doctors. Within a week we had an appt for Genetics to run test. On April 1, 2003 he was diagnosed with MLD. What a nightmare. He loves baseball and any other sport also. He would not go anywhere without his glove. He got to play T-ball in the spring. By the end of the school year in May he really could not walk long distances. Dreams Come True in Jacksonville, FL sent him on a dream to Walt Disney in July 2003. By the time school started in August 2003 Todd was in the wheelchair full time. On November 7, 2003 Todd had a G-Tube placed for feeding. He can still eat soft things, but not enough to keep him nourished.