Fiona Hope for a Cure of GM1 Disease

$6,117 of $500,000 goal

Raised by 71 people in 40 months
Meet Fiona

In one phone call our hopes, plans, and dreams changed forever.  Our beautiful 7 week old daughter, our only child, was diagnosed with a terminal rare genetic and degenerative disease called GM1 Gangliosidosis, Type 1, for which there is no cure and little scientific knowledge. We decided to make our home a place of comfort, love, and a place of JOY for our sweet girl for whatever time we had left with her.  We knew her life would be a short life, but we wanted it to be a happy life!  We were convinced we had only a few months left with our little girl, but in spite of her continuous deterioration, Fiona has beaten some of the odds and will turn 4 years old on June 8.  She’s physically fragile but a fighter and she fights every single day.

Please explore our site and read Fiona’s entire journey at www.hope4fiona.org

Children with GM1-Gangliosidosis are born without a vital enzyme called  beta-galactosidase, that breaks down byproducts of cellular metabolism called lipids.  Because the enzyme is missing, the lipids build up and  become toxic to a child’s cells, particularly cells in the nervous system.  Nerve cells in the brain and spinal cord are gradually destroyed, which in turn robs a child of their ability to walk, sit, stand, eat , swallow, see, hear, and eventually breathe.  In most cases, children contract pneumonia by the age of 2 and do not survive.  This disease affects both genders, all races, all countries and continents. We want to spread awareness and find a cure!

Fiona is participating in a pharmacological trial at the University of Minnesota.  The treatment regimen includes the FDA approved drug Miglustat.  Miglustat catalyzes many chemical reactions in the body and it theoretically prevents the formation of GM1 Ganglioside - the specific lipid building up in Fiona’s cells.  If Fiona had some residual level of enzyme (beta galactosidase) in her cells and we were able to prevent the formation of GM1 Ganglioside, theoretically we could stop the progression of her disease.  We think this is how Fiona has “beaten the odds” and lived to 47 months of age; however, extensive, irreversible neurological damage still occurred.

GOAL

There is promising research being done at  Auburn University in Alabama headed by Dr. Douglas Martin; however, funds for the trials are lacking and need financial support.  The folks at Auburn have contributed tirelessly to this effort and have paved the way for Gene Therapy.  Gene Therapy carries the hope of repairing the genetic mutation present in these kids so that their bodies create the missing enzyme the way they’re supposed to.  We are grateful for what they have accomplished thus far and want to help fund the research.  Please consider supporting the Auburn  University research and our daughter Fiona and all children with GM-1.  We are so hopeful for a cure!  This is our chance  to find a cure for all GM-1 children and save their lives. Learn more about the research here:   http://www.vetmed.auburn.edu/srrc/#.VOPH5NTnbmh

Hope4Fiona’s mission is to learn more about this disease and to fund a cure for GM1-Gangliosidosis as soon as possible to prevent future children and family to go through what we have.  So, the goal is simple: to find a cure for this disease! We will do this by directing ALL fundraising dollars into the hands of lab researches, companies, or other organizations that are determined to find a cure and to Fiona Kindness Box Project. I started Fiona Kindness Box Project as way to pay forward for all of the kindness and generosity that was shown to our family. What began as a family project has grown into  something beautiful and amazing! Our namesake, Fiona is the inspiration for starting this project. Our journey has taught us that so many children need love, support, encouragement, prayers, and little happiness when they are in the hospital or fighting at home.

Fiona Kindness Box Project send boxes full of “happiness” to those who need a smile-children with rare diseases like Fiona for there is no cure, GM-1, Tay Sachs, Canavan, Sandoffs, Cancer, Leukemia, Cerebral Palsy, Seizures, Mitochondrial Disease, Neurological Disorders, Babies in NICU, Surgery and Heart Transplant Patients, etc. We are excited to be a small part of spreading Fiona Kindness Box Project one box at a time. Please contact me if you like to sponsor a box.  It’s about what we can do for others. So my greatest hope for this project is that you might take way some inspiration, thought, or idea that moves you…to either just smile or to take some action on your own.

Act of kindness help restore faith in humanity-the more you give, the more you will receive, and it can even cause a chain-reaction of kindness!

Hope4 Fiona.org will raise funds one dollar at a time, by organizing and fundraising. Please donate via GOFUNDME or through the mail.  ALL dollars will go directly towards research for a cure and Fiona Kindness Box Project. We will send the hope4fiona wristband to all our donors if they like.

We will continue to work tirelessly to raise awareness of this disease, and support and educate families as they deal with the devastating diagnosis that GM1- Gangliosidosis can bring, until we find a cure.

Together, We CAN Make a Difference

Fiona today and her Future

Fiona is stable as she continues to fight GM1-Gangliosidosis and its complications each day.  We feel blessed that she is still here for us to love and care for.  Fiona is now 47 months old.  She was never supposed to reach 24. Fiona is in a very fragile and delicate condition requiring constant monitoring, assessment, and interventions.  She requires a “mini ICU” in the house along with a germ free environment to keep beating the odds.  My husband and I are the only people who care for Fiona at this time.  It is a labor of love and we are often exhausted, but we are blessed to have her here with us.

We still don’t know how long we have with her, but honestly, we don’t know what lies in any of our futures.  Instead of focusing on all the things that  GM1 has taken away from Fiona, we have chosen to celebrate Fiona’s life.  No matter how short her life will be, we have witnessed that it has been a life of value and meaning. She has taught us so many things, mostly importantly, that life is precious.

Hope

We have learned that having hope makes us stronger. Hope for a cure. Hope for a good day. Hope in helping others with GM1-Gangliosidosis. With your help, our HOPE is to find  a CURE for all children with GM1 Gangliosidosis.
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Our words are failing us this day. This sweet light in our lives... We can only simply say... Our angel Fiona is in heaven. She went peacefully surrounded by love early this morning. She left her body and immediately was in the presence of Jesus. No more GM-1. We miss her. We love her and we are more grateful than ever to know all the beauty she brought into our lives... Hug your beloved ones. Lay next to them and kiss their cheeks and hands. Ask them about their important things and lock it all up in your heart. There will come a day when it will not be as easy to come by and you will need those tender, caged moments to carry you through. Love fiercely, without end. We loved her more than she could ever imagined ❤ We will see you in heaven our sweet angel girl ❤ With deep sadness, deep love and joyous remembrance, Dee & Paxton"
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This sweet girl turned 4 years old Monday, which is a huge milestone for GM1 children!She has brought more joy and love to our family in the past year than we thought possible. We love and adore our sweet girl! Mondays miracle is the perfect celebration of our sweet Fiona's 4th birthday and the wishing of many more to come. Thank you for all those who gave donated! Please feel free to share our link.
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Thank you so much for all those who donated thus far. This is because of all of YOU. Every "like", share, post, private message, contribution was noticed, felt, and humbly thanked. Please keep sharing Fiona's page not only hopes that we help raise more funds to find a cure for GM1 but to spread awareness! With your help, our HOPE is to find a cure for all and future children with GM1!
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It has been a slow start to our campaign, but I truly believe that helping to raise funds can give hope for future children with GM1. Thank you for all those who donated, share our link, re-posts and sweet words expressed.....no one can do everything, but everyone can do something!
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$6,117 of $500,000 goal

Raised by 71 people in 40 months
Created May 15, 2015
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LL
$25
Larry and Donna Lee
15 months ago

Remembering Beautiful Fiona on her 6th Birthday! God bless! Love you and miss you! Larry and Donna

EP
$100
Erin Piantedosi
21 months ago

I can't believe you have been in Heaven for a year already. Merry Christmas sweet baby girl. You are always in our thoughts and prayers. We love and miss you always. -Erin, Erik, Sofia and Vinny

LL
$25
Larry and Donna Lee
27 months ago

Remembering our sweet little neighbor Fiona on her 5th Birthday. God bless you always! With our love, Larry and Donna

$50
Kate Hubbard
28 months ago (Monthly Donation)
TP
$100
Tracy Petrik
29 months ago

My prayers are that they find a cure for this terrible disease affecting the little ones.

$50
Kate Hubbard
29 months ago (Monthly Donation)
$50
Kate Hubbard
30 months ago (Monthly Donation)
$50
Kate Hubbard
31 months ago (Monthly Donation)
SC

In memory of Fiona King.

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