Could you turn your back on them and slowly walk away?
Or would you take the time to listen to what they had to say?
This precious child Emm with the smile so warm and bright
and eyes that sparkle like stars shinning in the night is reaching out to you and the compassion in your heart, to walk beside her in the battle she must start.....
Written by, Hal Hansley.
And now the tables have turned.
The doctor spoke the words gently but it felt more like a curse being screamed at her.
She will never forget the way it felt when she heard she might die.
She was scared. She felt her heart break as the tears came. She laid down beside her mother, who reached out and held her. Her mother promised to take care of her as she thought to herself “my life is ending!”
She was 16 years old when she found out. She went from happy to wondering what would become of her. We went from enjoying our time with her to trying to save her.
What would you do if your child was diagnosed with a disease you couldn’t make go away? What would you do if the disease was so rare that hardly anyone has ever heard of it?
We’ve always known she was unique and rare, but we never would have expected she would face an autoimmune disease just as rare as she is. MPGN, Type 2. This is the name of the disease she battles physically, mentally, and spiritually every day.
And it’s happening faster than her doctors thought it would. It’s only been a few months, but already her blood pressure soars. Her body swells up because almost all of her protein is flushed away. The unbearable headaches force her body to curl up in pain. Medications never help and the headaches get worse each time they come knocking at the door, uninvited.
This disease is an enigma, or perhaps more like a riddle- something to be solved.
And the whole time we try to solve it, her immune system continues attacking her.
What would you do if you felt there was nothing you could do? Would you do nothing? Just give up? Or would you keep searching for an answer while you reached out for help?
That's what we’re doing.
We need you.
We are asking you to help us save her.
MPGN is an autoimmune disease that attacks the kidneys. Sometimes there is another disease within the body that causes MPGN to show up. But for Emily, that isn’t the case. There is no other disease to treat. The doctors don’t know why it’s happening. It’s a glitch in her system.
There are three different forms of MPGN, which affects an estimated two to three young people per million. Even rarer, Emily was diagnosed with Type 2, which accounts for fewer than 20% of all children with MPGN.
About half of the people with MPGN progress to end stage renal failure disease within 10 years of diagnosis. Please note that kidney transplant recipients face disease reoccurrence in their allografts.
There is no chemo to try. There is no surgery to schedule. There are medicines, but Emily’s body is not responding to them.
So why do we have faith?
Because MPGN can go into remission or improve.
We need to continue to support Emily’s mind, body, and spirit until that happens.
Conventional medications are not helping Emily. Therefore, we are looking into alternative medical treatments. There is a place of hope called Sara’s Garden in Wauseon, Ohio. They offer Hyperbaric Oxygen Therapy that offers a healing dose of oxygen into the body. This therapy has helped other people with autoimmune diseases (please see the link below). Doctors are currently looking into this treatment option.
Unfortunately, insurance will not cover these potentially lifesaving treatments.
That is why we have decided to reach out and seek financial assistance. Your gift will also be used to go towards other medical care needs, travel expenses for medical appointments, and the like.
Any contribution helps, no matter how small. Every tiny bit of love and support adds up.
To know Emily is to love her. She is a wonderful person- kind, caring, devoted, loyal, funny, helpful. She is not only intelligent, but she is wise beyond her years. She is artistic and full of joy. She doesn’t steal hearts- she simply heals them just by being.
This is why we ask- what would you do to save her?
What would you do to save Emily?
*******Please join our cause and find more information, including updates, and a schedule of events at http://www.facebook.com/giftsforemilyslife
Gifts given to Emily's Life will go to things such as medical needsincluding treatments, general care, nourishment, travel expenses and the like. Your support means so much to us.
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