Lillian Grace Smith

$12,771 of $12.5k goal

Raised by 191 people in 61 months
 

Ben and Kathleen's 5 1/2 month old daughter, Lillian Grace, was admitted to Children's Hospital on March 7, 2012 due to concerns with her loss of mobility and muscle control. After extensive metabolic, neurologic, and genetic testing it was determined that Lily has a rare, degenerative genetic disorder called Krabbe disease.  They have been told that she is only going to be with them for a short time. In that time her functions and mobility will steadily decline. There is very little that they can do except help Lily cope with the pain and surround her with love. Please continue to pray for comfort for Lily and strength for their family.  Thank you all for your love, support, and friendship in this very difficult time.

For more information on Krabbe disease, please visit the following websites:

www.huntershope.org

http://www.ninds.nih.gov/disorders/krabbe/krabbe.htm

www.caringbridge.org/visit/LillianGraceSmith

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Update 10
Posted by Amy Howell
55 months ago
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Thank you to those who are still sending in donations! Lily is living with Kathleen in the Ronald Mcdonald house in anticipation of coming home to MD!!! Preparations are under way to prepare the Smith home for Lily and her new accessories....
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Update 9
Posted by Amy Howell
59 months ago
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Lily is a little fighter! She is off of the ventilator but continues to have some trouble breathing so she remains in the ICU for closer monitoring. BUT her cells are GROWING!!!! This is amazing news! Keep praying that she continues to produce cells and that her immune function begins restoring itself. The fundraisers thus far have been very successful and more fun events are in the works! Thank You to all of you! Check out Lily's caringbridge site for updates from Kathleen.
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Update 8
Posted by Amy Howell
60 months ago
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Keep praying for little Lily! She is having a rough go.....Due to side effects of the strong chemo meds, she is now on a ventilator to help her body rest and get her through as safely as possible until those new cells start growing and rebuilding her immune system. Continue to pray those germs away! Thank you to everyone who participated in the Papa Johns fundraiser and to those who plan to attend the benefit on Saturday!
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Update 7
Posted by Amy Howell
60 months ago
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Today is a big day for Lily, the strongest of the chemo starts to prepare her for her transplant on Friday. Please pray for minimal side effects from the medications and, as always, no opportunistic germs! Thank you again to everyone who has donated, you are making an incredible difference in the life of this famiy. Stay tuned to Lily's caringbridge site for updates....
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Read a Previous Update
Ben Smith
60 months ago

I would like to personally thank each and every one of you for your donations to help with Lillian Grace's medical expenses and continued prayers for our baby. Each of you mean so much to us and we thank God for you everyday. Your generosity in our time of need means the world to us but your prayers for Lily are all we ask for. We thank the Lord for you and pray that the Lord God bless you and keep you.

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Amy Howell
60 months ago

Update: Dr. Escolar, of Pittsburgh Children's Hosptial and a leading researcher in Krabbe disease, feels Lily is a candidate for stem cell transplant. This procedure, though not curative, will allow Lily to grow and develop well beyond the original life expectancy. Kathleen and Lily are relocating to Pittsburgh and will remain there for at least the next 3 to 4 months. Please keep them and the rest of the Smith/Blackwell families in your prayers as they begin treatment this week.

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Amy Howell
61 months ago

For those interested in reading Lily's journal, Kathleen has started a caringbridge site and would like to share it with you.... www.caringbridge.org/visit/LillianGraceSmith

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Amy Howell
61 months ago

Thanks so much to everyone who has jumped in to help out so far. Amazing! For those who do not feel comfortable donating online, please contact me for other ways to donate. Your kind words of encouragement are truly priceless.

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$12,771 of $12.5k goal

Raised by 191 people in 61 months
Created March 13, 2012
Amy Howell  
$100
Anonymous
49 months ago
TS
$100
The Sauls
51 months ago

God Bless You for your strength and your faith.

$50
Anonymous
51 months ago
I
$30
Iris
54 months ago
$100
Anonymous
55 months ago
$100
Anonymous
56 months ago
$20
Anonymous
57 months ago
VS
$50
Vern & Debbie Saunders
57 months ago

Lily and your family are in our prayers

ST
$50
Scott & Debbie Tice
57 months ago

We are praying for Lily and her family. I hope this helps.

$25
Anonymous
57 months ago
Ben Smith
60 months ago

I would like to personally thank each and every one of you for your donations to help with Lillian Grace's medical expenses and continued prayers for our baby. Each of you mean so much to us and we thank God for you everyday. Your generosity in our time of need means the world to us but your prayers for Lily are all we ask for. We thank the Lord for you and pray that the Lord God bless you and keep you.

+ Read More
Amy Howell
60 months ago

Update: Dr. Escolar, of Pittsburgh Children's Hosptial and a leading researcher in Krabbe disease, feels Lily is a candidate for stem cell transplant. This procedure, though not curative, will allow Lily to grow and develop well beyond the original life expectancy. Kathleen and Lily are relocating to Pittsburgh and will remain there for at least the next 3 to 4 months. Please keep them and the rest of the Smith/Blackwell families in your prayers as they begin treatment this week.

+ Read More
Amy Howell
61 months ago

For those interested in reading Lily's journal, Kathleen has started a caringbridge site and would like to share it with you.... www.caringbridge.org/visit/LillianGraceSmith

+ Read More
Amy Howell
61 months ago

Thanks so much to everyone who has jumped in to help out so far. Amazing! For those who do not feel comfortable donating online, please contact me for other ways to donate. Your kind words of encouragement are truly priceless.

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