Desperately Need your HELP

[Guest guest]

To all of my support group friends,

I am

seeking as much help as possible from you for a family situation. My niece, 2

year old Grace has a rare metabolic disorder called Maple Syrup Urine Disease

(MSUD). This has some similarities to mitochondrial disease in the sense that

any small sickness can result in severe and permanent neurological damage. This

is something we can all relate to. She is on a severe and torturous diet,

where every single bite that goes in her mouth must be measured on a gram

scale. Any simple mistake can also cause damage. No one has ever made it

to adulthood without some kind of damage from this disease, even when following

such a difficult diet. She spent a week with me recently in the month of

December. If you all recall, Leanna, my 6 year old was very sick and so

my sister –in-law came to visit Leanna with Grace because we did

not know what would become of Leanna at the time. Grace’s parents

are Samya and Leanna’s godparents. It broke my heart to see her terrible

diet and to watch her be told that she could not eat more than 6 Mc’s

fries

The good news is that

there is a cure for her disease. It is a liver transplant. With a new liver,

her body will be able to produce the enzyme needed to break down the proteins

that she can’t now. Her father has served the Military for over 15 years

now, and their medical insurance is through the military. They are refusing to

pay for Grace to have the transplant at the best, most experienced, and

competent hospital in the country. That would be Pittsburgh Children’s

Hospital.As parents, they do not want to give their daughter less than the best

chance possible of surviving a liver transplant because of money. I am sure all

of you , had you been in the same situation, would want only the best. I know

myself that if only there was a chance of saving my precious Samya’s

life, I would not have hesitated at the chance, regardless of cost. The problem

is that the surgery will cost $150.000 and a military salary is not so much. They

cannot possibly afford this. Grace has been evaluated and found to be an excellent

candidate. Now, they need to fundraise the money.

A

fund has been set up for this ,a national liver transplant association for

Grace. Any donations can be tax deductible, and do not go directly to the parents.

They are held in the fund and disbursed by the organization for the transplant

only.

I am asking you

all , if you can, to please help us with this situation. Any amount is appreciated,

big or small, and will help to save Grace’s life and provide her the chance

to live a normal life. I thought of all of you guys because, unfortunately, we know

how it feels to live with a horrible disease. You have been so supportive to me

and helped me so much. WE have a strong bond, and I only wish that we were dealing

with a disease that had a possible cure. When I look at Grace, I see Samya who did

not have a chance. I want Grace to have that chance. There is a website that you

can go to for information, and instructons on how to help. It is www.allaboutgrace.org or www.allaboutgrace.net or you can

even find the website through the links on Samya’s website.

May

God bless you all,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

[Guest guest]

Suhad, I certainly hope Grace gets the transplant she needs! I will keep her and your family in my prayers.

Has your SIL looked into chartible organizations that will help? A good placce to start would be the Shriner's or Easter Seals. HTH

e, Chelsea's mom(nonspecific mito)