MEDICAL HELP FOR SAMANTHA

 
Raised: $960.00
Goal: $5,000.00
 
 
 

Created by

Susan Santora McArthur

485 Friends

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Samantha is a vibrant girl who was once full of life and energy.  She suffers from a rare, incurable white blood cell disease called Eosinophilic Esophagitis (EoE).  This causes the body... more

 
 
 
 
 
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Updated posted by Susan Santora McArthur 12 days ago

I haven't updated this in so long, and unfortunately the time has come to try to do something. Samantha's medical issues are mounting. We find ourselves having to travel to Jacksonville and St. Petersburg frequently.

We finally found a great mito doctor in Jacksonville and he has been wonderful to Samantha! Taking the drive six hours north is costly. He has also changed and increased meds for her mito cocktail which insurance does not pay for.

We travel two hours north for her spine doctors. Samantha is suffering from severe spine issues which include two fractures in her back, disc herniations and bulges and degenerative disc disease - just to name a few. She is currently wearing a special back brace in hopes that this would help. So far it has not and she continues to suffer immense pain.

Im trying to work on a local fundraiser soon to help offset some of these costs.

Its with a very heavy heart that I even have to do this. We've always done fundraisers to help organizations such as the Cured Foundation and the MDA (Muscular Dystrophy Association). Both organizations help Samantha's diseases and have been wonderful. We love helping other people, but when it comes to helping ourselves, it proves very difficult.

Perhaps it is my pride. I don't know. I hate having to do a personal fundraiser to help with something I should be able to do as a mom.

Many of you know that Samantha suffers from Eosinophilic Esophagitis and Mitochondrial Disease. Some may not know what those diseases are. I have included two links at the end of videos we have made to help inform.

In addition to the EoE and Mito, Samantha has been diagnosed with spondylolysis and spondylolythesis (fractures in her spine and slippage), Scheuermann's Disease (which is an upper curve of the spine), Carnitine deficiency, Ehlers Danlos Syndrome (which is a connective tissue hypermobility disorder) and a host of other issues.

This has taken a huge toll emotionally and physically on her, yet through it all she remains strong and postive and smiles her beautiful smile.

If you cant help, we truly understand. Perhaps you can simply share her link or say a prayer. All are truly appreciated.

Here is her Mito video:

http://www.youtube.com/watch?v=1OoglXvh0T8

Here is her EoE video:

http://www.youtube.com/watch?v=-zBBS6Vd6Wg

Thank you!

 
 
 

Updated posted by Susan Santora McArthur 15 months ago

Well, the holidays have come and gone. On to a new year. I hope it finds us all in a much better place than 2012 proved to be. So much has happened in the past year. While we've been able to add in a few foods to Samantha's diet, we opened up another chapter of heartache as we venture down the road to uncertainty with the Mitochondrial issues. When we saw the mito/genetic doctor in Atlanta, she put Samantha on what is called the "mito cocktail". This is a variety of things compounded into one medicine. The dr gave us a script for 2 months, while we were waiting the outcome of testing. The dr recently called in a new script for one year. This broke my heart. It indicates that she still wants Samantha on the cocktail. We received bad news from her buccal swab testing and it indicates a mitochondrial problem. We have completed all labs and results are in. We are currently waiting to talk with the mito doctor to see where we go from here. It's so hard dealing with a specialist out of state. Insurance refuses to help out financially because it is an out-of-state doctor, even though I have explained to them that there is no other doctor like this in Florida. We still have the site up and running for anyone wishing to donate to help Samantha. We truly appreciate everyone who has been able to help at this point. More out of pocket expenses are coming for doctor appointments, meds, etc. We seem to have a handle on Samantha's EoE at this point. The G tube was such a blessing, allowing us to start with a "clean slate" and trial food slowly one at a time. We're still not where we want to be and EoE has reared it's ugly head last night. But overall, I think this Mito stuff is going to be much more of a challenge. We are trying to take things one day at a time. That's all we can do.

 
 
 

Updated posted by Susan Santora McArthur 17 months ago

I haven't updated in a bit because life has been crazy. We took the tiring trip to Atlanta to see the specialist and Samantha has been clinically diagnosed with mitochondrial disease. The trip took its toll on Samantha and once we got home, she became really sick. We have already done some testing that takes approx a month for results. Other tests will be coming up soon. I can't thank everyone enough for their donations. Please share Samantha's link if you can. Your help, donations and prayers mean more than we can say.

 
 
 
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Created by Susan Santora McArthur on October 8, 2012

Samantha is a vibrant girl who was once full of life and energy.  She suffers from a rare, incurable white blood cell disease called Eosinophilic Esophagitis (EoE).  This causes the body to think food is a parasite & attacks itself.  Samantha also suffers from Mitochondrial Disease.  This horrid disease affects her muscles and many other organs.  It causes extreme fatigue, muscle weakness, hypoglycemia, hear issues and several other problems.  She was also diagnosed with severe spine issues as well.  She was fitted with a special back brace which is not helping at this point.  Her pain level continues to climb and her muscles have gotten weaker and weaker.  We continue to travel to different specialists in different cities and it takes its toll on all of us.  It is our hope to find a cure someday to all of these diseases.  In the meantime, we try to take things one day at a time.  That's all we can do. 
 
 
 
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Recent Donations (17)

$960 raised by 17 people in 18 months.

$25.00

Anonymous

11 days ago

 

$20.00

Jamie Corley

12 days ago

 
 

Love Jamie and Paige!! Keep smiling sweet Sam

 

$25.00

Michelle DiSanto

15 months ago

 
 

Wishing it could be more. We are all traveling a crazy and difficult road but I know any little bit helps. Blessings to you all.

 

$50.00

Alexander St. John

17 months ago

 
 

Thinking of you Samantha!

 

$50.00

John & Jaycine Lester

18 months ago

 
 

We like your positive attitude. We wish you success in Atlanta. Keep smiling! May God be with you.

 

$100.00

Anonymous

18 months ago

 

$50.00

Anonymous

18 months ago

 

$50.00

Don & Joanne Liberti

18 months ago

 
 

For my beautiful niece

 

$25.00

Anonymous

18 months ago

 

$100.00

Ervin Bracy

18 months ago (Offline Donation)

 
 

1-10 of 17 donations

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