Project Cure (Project Cure Project Cure)

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Jul 12, 2009 12:34 PM An update and a look ahead.......
Apr 2, 2009 5:27 PM Team Hope Blood Drive April 18th
Jan 22, 2009 10:07 PM About The National Ataxia Foundation and Ataxia
Jan 22, 2009 10:04 PM About the United Mitochondrial Disease Foundation and Mitochondrial Disease
Jan 22, 2009 9:57 PM About Primary Immunodeficiency Disease and the Immune Deficiency Foundation

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RMR Music Presents
Project: Cure
Fighting for a Cure through Music
Project: Cure was born from the love of a mother (Stefani) and the kindness and talent of her close friend (Mark).
Stefani is a mom to 2 beautiful warriors who battle their own life threatening/chronic illnesses. After many conversations together about the heartache, the loneliness, and the fear that a parent can encounter in the face of the unknown, Project: Cure was born. Together they forged an alliance to make a difference for individuals facing chronic, life-threatening, and/or terminal illnesses.
Project: Cure has a vision to provide families or individuals in their time of need with an outlet (music) that they can relate to, gain strength and encouragement from, while also donating all of the proceeds to 3 specific foundations.
The compilation will feature 12 songs (minimum) with ALL proceeds to benefit the Immune Deficiency Foundation, National Ataxia Foundation, and the United Mitochondrial Disease Foundation. Compilation will primarily be sold online in MP3 format via iTunes, Amazon, etc. *There will be a limited number of CD’s available for publicity purposes.

To learn more about these causes go to
www.primaryimmune.org (Immune Deficiency Foundation)
www.UMDF.org (United Mitochondrial Disease Foundation)
www.ataxia.org (National Ataxia Foundation)

This is why we fight with every breath that we breathe....
Music

Blurbs

About me:

Here's a little information as to WHY this is being done...

My name is Stefani - I'm one of the creators (Mark Eshbaugh being the other) of Project: Cure.

My 2 children are the inspiration of this project....but it goes much further than this....

Both children battle life-threatening diseases - and through our journey through these illnesses, I have met some amazing and incredible families. One of the things I noticed was that there really wasn't a whole lot of music out there that REALLY pinpoints the heartbeat of the struggles that are faced when dealing with life-threatening, terminal, chronic illnesses - or even a major battle.
Music is one of the greatest and most effective healers - and the more I spoke to people and the more I listened to what they were saying, I realized that SOMETHING needed to be done - not only to support them, but to strengthen them and to help them in their journey.....I began talking about this with my good friend Mark - and...Project: Cure was born.....

I have been blessed to have MANY friends and family members who are faithful supporters, cheerleaders, and prayer warriors on this journey - but I realize that the journey has just begun....and we ALL need a little healing sometimes.
This is my journey.....and I want to share it and I want to help others through theirs as well....

We wanted this to not JUST be about 'supporting' and 'healing' - because, while those are great things in and of themselves....we felt we could do MORE.....so we decided to make this a fundraiser - donating ALL profits to 3 causes that are near and dear to our hearts.
As a result: The Immune Deficiency Foundation (www. primaryimmune. org), The United Mitochondrial Disease Foundation (www. umdf. org), and The National Ataxia Foundation (www. ataxia. org) will be receiving all the profits from this fundraiser - to go towards RESEARCH for CURES for these diseases. If Project: Cure is successful in it's first run - we will choose 3 more charities to raise funding and awareness for!!!!!

We sincerely appreciate the continued support and we hope that you all feel the same way that we do....
That EVERYONE is WORTH a CURE.....

Meet Will and Sasha - my heroes - and the inspiration for this project:

Photo Sharing - Video Sharing - Photo Printing

Photo Sharing - Video Sharing - Photo Printing

Will and Sasha's Journey.....

Will's Story
Will was born in 2003 - he was a strong and cute little baby! Since birth, he has battled constipation (and still does to this day), sensory issues, and sickness.
Much of his life has been shrouded with illness, infections, and doctors visits...but through it all, he still won our hearts!!!!
Due to a major regression, lack of speech and eye contact, and repetitive and obsessive behaviors, he was diagnosed with Autism before the age of 2. I was DETERMINED to not let a diagnosis chart the course of Will's life. Through many hours of home based therapy (5 days a week), a lot of hard work and many tears (for the first 3 1/2 years of his life) progress was made. At age 3 1/2, he moved up the 'autism spectrum' to PDD-NOS (another form of autism - more mild in it's course). We continued with home based therapy and continued to explore different ways to reach out to Will and help him find his bearings in this world. At age 5, the developmental specialist felt that he had progressed so beautifully that he didn't fit the diagnostic criteria for PDD-NOS any longer and he now carries ADHD, OCD as a diagnosis. He still struggles socially and still has some issues, but he is so high functioning that - to someone who had never met him before, he appears 'typical' for his age group!
He's an amazingly charming and sweet boy with SO much heart and compassion!
His first years of life were spent in and out of hospitals and doctor's offices as he was sick quite often. He was finally diagnosed with Primary Immunodeficiency Disease (also known as PIDD). Due to recurrent and severe infections (despite a daily low dose antibiotic to prevent infections), it was decided that he needed to start Gammaglobulin Replacement Therapy (also known as IVIG or Sub-q Ig). Will began receiving weekly infusions of blood product(2 needles that run gammaglobulin over the course of 2-3 hours)at the age of 4 1/2 and continues to receive them to this day.
The infusions have been life saving and life changing...he went from missing over 60 days of school last year to not even a fraction of that this year so far!!!!
In 2004, Will was diagnosed with a Chiari Type I malformation with restricted Cerebral Spinal Fluid Flow (meaning that the cerebellum herniated down into the brain stem restricting the CSF flow in his brain). We continue to watch this condition and Will needs to be careful as simple small accidents that involve the head can be quite serious with this condition.
Recently, Will has been struggling getting sick anytime he goes for more than 2 hours without eating (during the day). It was found that he has a condition that is called Ketotic Hypoglycemia (meaning that his body is having issues with blood sugar regulation and it makes him sick). We have modified his diet and he appears to be doing much better with this change in place.

Sasha's Story......
Sasha was born mid 2005 prematurely. She was 36 weeks but struggled like a baby born at 27 weeks. Out of the first 40 days of life, she spent 28 of them in and out of ICU's with various issues ranging from heart to feeding complications. She was already beginning to give the doctors a run for their money!!!
Sasha was clearly not normal right from the start, but no one could figure out what it was that was not 'normal'. Some of her symptoms were neurological (she had low muscle tone and she had trouble eating, drinking, walking, and she would struggle when she exerted herself) - but there was never a 'clear' issue that stood out more than anything else.
She began receiving early intervention in the home to help her with her fine and gross motor skills (which she struggled with).
At 9 months, Sasha's immune function was tested because she too was ill for much of those 9 months. Our worst fears were confirmed - she too had an immune deficiency. We had hoped that her immune system would improve over time, but unfortunately the opposite occurred. At 15 months, while on a 21 day course of Augumentin for a sinus infection, Sasha developed bi-lateral bacterial pneumonia. She was VERY VERY sick - and that was the final straw. The immunologist decided it was time for her to start gammaglobulin replacement therapy. She began weekly infusions at 17 months and continues to receive them to this day. Like her brother, she has responded wonderfully to the treatments....but, like her brother, she still gets sick (and sometimes she gets REALLY sick) and it's STILL not a cure...and it's a treatment that carries some REAL risks.
As time went on, it was suspected that Sasha also carried the PDD-NOS diagnosis due to lack of social communication, lack of eye contact, repetitive behaviors.
She began receiving more services within the home setting (26 hours per week). After many months of hard work and love and tears, she began to make progress and blossom into a spirited and amazingly beautiful little girl!
March 2008 was a really rough month for her - it seemed like everything was starting to come to a head. She was admitted to the hospital in order to have ALL the doctors converge together and try to figure out a plan of action for her. I don't think I've EVER seen SO many doctors at one time in my life....there were teams that would come in several times a day (it was almost like they were playing 'tag team' outside her room)...I just lost count of all of them...but all that mattered to me was that they were there to help my baby girl find some peace and comfort. A plan was formed - but we were cautioned that this would NOT be an easy fix....she was complex and this would take TIME.
In April of 2008, Sasha had a seizure - which seemed to set off a series of events. She began having what appeared to be stroke like episodes (half of her face would droop and one of her eyelids would sag). She had left sided weakness and had significant trouble using the left side of her body to do much of anything. Her fatigue increased and she started having spells of unresponsiveness...we felt like Sasha was slipping away from us.
We were instructed to begin keeping a detailed photo, video, and written diary of all of the things that were happening to Sasha in hopes that it would shed some light on what was going on.
The most concerning thing was that there were some AMAZING specialists in Boston that were seeing her - but none of them really had ANY idea of what to make of what was clearly happening to her....she was a mystery.
A specialist who's area of study was metabolism/genetics met with us in July - he had been sent all of the videos/photos that we had along with a 7 page family history prior to our visit with him. He walked in the room, greeted us and then told us almost right away that he thought he knew AT LEAST one thing that Sasha could possibly have....Episodic Ataxia Type 2 and Familial Hemiplegic Migriane (also known as EA2/FHM). He also felt that there was a possibility (as her neurologist had also suggested) that she had some type of Mitochondrial Disorder. We did the testing for it and waited....and waited...and waited...
Meanwhile, the symptoms progressed - Sasha continued to go downhill - she would have shaking spells (that weren't seizures) and she would spend many days complaining of terrible pain in her head - having trouble walking, talking, eating - and she was crying most of the time and very irritable (can you blame her?).
The neurologist scheduled her for MRI/MRA/MRS, spinal tap and muscle biopsy. At the last moment, we decided to wait to do the muscle biopsy as the genetic testing had not yet come back and we worried that we would do a test that might not need to be done if the genetic testing showed something....
Sure enough....after 3 months of waiting - Sasha's testing revealed that she had a NOVEL mutation in her EA2/FHM gene that has NEVER been seen before in ANY species (human/animal) - and it occurred in a critical region. The news wasn't great...but it was news nonetheless.
She also had a mutation in her mitochondrial DNA analysis thus continuing to lead them to believe that some type of mitochondrial dysfunction or disease were a factor in all of this.
She began a trial period of Acetazolamide (which is used to treat patients with EA2/FHM) in November to see if it helped her symtpoms - and, while it has helped with SOME of the symptoms, she STILL has the extreme fatigue with any exertion - her face still droops, and she still has terrible headaches.
Sasha has now been referred out of state for further evaluation with someone who specializes in Mitochondrial Disease and Episodic Ataxia Type 2/Familial Hemiplegic Migraine. We are currently awaiting the insurance approval for this appointment.
Isn't it terrible that insurance companies dictate who your child can and can't see - yet they've never even laid eyes upon them or walked a mile in their shoes? SIGH....
We are also awaiting for insurance to approve her medical grade wheelchair/stroller as she is too big for the one she has now and I am too tiny to carry her around when she's having a bad day.
Some days I look at Sasha and she looks absolutely NORMAL...she talks, walks, laughs, has a grand old time just like a 3 year old should.....Other days, my heart just breaks for her because she can't walk normal, she can't run and play normal, she has trouble swallowing her food and drink, and she just wants to sleep.

There are nights that I have found myself awake in bed wondering WHY in the world such a burden has been placed upon such a life so small...yet here we are....and we are fighting HARD to give both Will and Sasha the health, the comfort, the peace, the strength, the answers, and the love that ALL children deserve...that many take for granted....
These children are the most inspiring and AMAZING gifts from Heaven. They are warriors and lambs with a fierceness and tenderness that could light the way even in the darkest night.
Our journey with Sasha and Will, we've learned some amazing lessons.
We've learned that life is not always what you envisioned it would be - and that can be a tough pill to swallow...but somewhere in the thorns, there is beauty....and we have to try not to fix our eyes on the things that are wrong - we must fix our eyes on HOPE and hang on for dear life with our faith.
We teach our children that their illnesses do NOT define them....THEY define their illnesses....
My husband and I created a local group called "Team Hope" and joined with other families in our area that also have PIDD. The children (there are 6 of them) have found forever friends - children just like them who UNDERSTAND what they're going through - what a treasured gift that is!
We do blood drives and fundraisers for the Immune Deficiency Foundation (IDF) in hopes to raise awareness and funding for research so that one day a cure may be found not only for our children - but for ALL who battle PIDD. We are also active in legislative efforts and will continue to advocate and 'Be The Voice' for all out there who need it.
The children have learned the value of 'being a voice' and the they have learned about the beauty of the human spirit as they have been blessed by many who have helped our cause in our communities!
We end all of our emails and requests for support with a saying I came up with... "It only takes ONE person to change ONE life...BE THE ONE"
Truly...ONE person can make a difference - it doesn't matter how big or small - it matters that the heart was in it!
So...I end this with that same challenge....if not here...then somewhere else...I challenge you to BE THE ONE for SOMEONE out there who NEEDS you....you may never know how much it REALLY can touch someone....but trust me - it can mean the world!

Thank you for joining us on this journey and thank you for reading about my inspiration and my joy...
I will never stop fighting!
Blessings
Stefani....