Re: Kasey McCannon medical update 06/19/08

[Guest guest]

Ted and , I will have your family in my prayers. I'm glad to see if you

have a diagnosis and that Kasey is feeling better.

tedmc@... wrote:

IPADDUnite

(IPADD IL Parents of Adults with Disabilities)

From: McCannon Family

Ted, , Kasey, & Odie

Dear Family and Friends, 06/19/08

Yesterday Dr. McConnie, at Rush University Medical Center, placed Kasey's G-

tube and all went well. Kasey lost her verbal abilities for 2 weeks but has

become verbal again today and was able to eat and drink by mouth and she was

very alert.

We received an official diagnosis today from Mayo Clinic. Kasey has been

diagnosed with a rare genetic disorder, MPS III (Sanfilippo Syndrome). This

is a genetic error in which Kasey is missing enzymes needed for metabolism.

Kasey has always had this and it is really the primary cause for her

disability. We would never had known this if we had not brought Kasey to Rush

Medical Center.

At present time, there is no cure. Sanfilippo syndrome is a progressive

disorder. However, the rate at which children will deteriorate varies from

one individual to another and we have been informed there will be good days

and bad days.

I have attached two web sites where one can obtain information as to her

condition.

Sanfilippo syndrome

http://www.specialchild.com/archives/dz-034.html

National MPS Society

http://www.mpssociety.org/content/4039/MPS_III/

Ted & www.mccannon.net

tedmc@...

Ted & McCannon Kasey McCannon

45W104 Rd. Rush University Medical Center

Big Rock, IL 60511-9387 1653 W. Congress Pkwy, rm. 571

Chicago, IL 60612

Please feel free to share this letter with friends and family.

--

www.mccannon.net

McCannon Enterprises

45W134 Rd.

Big Rock, IL 60511

630-556-3100

630-556-4FAX(4329)

Finato

www.AngelSpeaks.com

www.wegrowdreams.org

[Guest guest]

Thank you for sharing...

Again. our thoughts and good wishes for a speedy recovery.

What a fascinating disorder...so thanks for sharing that, as well.

So glad your experience at Rush has been good and that they have fully accepted

Kasey's support dog as a member of the team and family.

Ellen

Ellen Garber Bronfeld

egskb@...

Kasey McCannon medical update 06/19/08

IPADDUnite

(IPADD IL Parents of Adults with Disabilities)

From: McCannon Family

Ted, , Kasey, & Odie

Dear Family and Friends, 06/19/08

Yesterday Dr. McConnie, at Rush University Medical Center, placed Kasey's G-

tube and all went well. Kasey lost her verbal abilities for 2 weeks but has

become verbal again today and was able to eat and drink by mouth and she was

very alert.

We received an official diagnosis today from Mayo Clinic. Kasey has been

diagnosed with a rare genetic disorder, MPS III (Sanfilippo Syndrome). This

is a genetic error in which Kasey is missing enzymes needed for metabolism.

Kasey has always had this and it is really the primary cause for her

disability. We would never had known this if we had not brought Kasey to Rush

Medical Center.

At present time, there is no cure. Sanfilippo syndrome is a progressive

disorder. However, the rate at which children will deteriorate varies from

one individual to another and we have been informed there will be good days

and bad days.

I have attached two web sites where one can obtain information as to her

condition.

Sanfilippo syndrome

http://www.specialchild.com/archives/dz-034.html

National MPS Society

http://www.mpssociety.org/content/4039/MPS_III/

Ted & www.mccannon.net

tedmc@...

Ted & McCannon Kasey McCannon

45W104 Rd. Rush University Medical Center

Big Rock, IL 60511-9387 1653 W. Congress Pkwy, rm. 571

Chicago, IL 60612

Please feel free to share this letter with friends and family.

--

www.mccannon.net

McCannon Enterprises

45W134 Rd.

Big Rock, IL 60511

630-556-3100

630-556-4FAX(4329)