Turner's Syndrome Conference for Madi!

 
Raised: $1,945.00
Goal: $3,200.00
 
 
 

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Mysti Harrison

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Madison had a pretty eventful birth, we were lucky she is here after all the events. However, we didn't know just how lucky until last summer. You see, Madison has always been 'small', b... more

 
 
 
 
 
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Updated posted by Mysti Harrison 9 months ago

Hey everyone!! Only 6 more sleeps till Dallas. Madison is very excited and has begun writing a list of things she must remember to pack (;) ) . We would not be here if it wasn't for all of you wonderful family and friends. Thank you guys so much. Here at the tail end of this journey we're nearly 100% covered. Just looking to raise a little more for some 'while we're there' expenses -- maybe even a trip something fun on Sunday when the conference ends .. we'll see! Thanks again everyone, I can't wait to post pictures and tells stories of our trip!!

 
 
 

Updated posted by Mysti Harrison 12 months ago

It's been about a month since I updated. Madison hasn't been feeling well, and now is off the Growth Hormone as it seems that it is causing her body to ... well, to go haywire. She was on the mend and then was ill again this morning. It seems her immune system is trying to recover from its bad reaction, but we're hoping she'll be 100% soon. We're not sure what this means for her staying on the GH. Lots of prayers on my part to God for discernment on this difficult issue is really leading me towards stopping the treatment, although, there is a slew of complications weather she takes them or not. Having to weight which option is best is a rather hard job. Thanks to all of you for your support, the tickets for the conference will be purchased in the next few days, and it seems we're ready to go! It would not have been possible without the help of all of you wonderful family and friends and your prayers and positive thoughts. Madison is excited (and so are we!).

 
 
 

Updated posted by Mysti Harrison 12 months ago

Today I received my 'welcome packet' from the Turner's syndrome society -- learned something new, apparently Madison is at high risk of hearing loss. This is something that was never shared with me (nor had I seen it in all of my literature) but there is a great likelihood that hearing loss has occurred, or will develop as she ages (she had many ear infections prior to reaching 3 years of age). I will be contacting her endocrinologist and GP asap to get an audiology referral. Hopefully we won't find out any news!

Fund raising is going well, we're very close to our goal and are looking to raise another 500 or so dollars to pay for the rest of our conference fees and travel fees (baggage, food, and if we're lucky a trip to a science museum with her TS friends at the closure of the conference!). Please keep sharing our story and praying that we reach our goals soon. God Bless.

 
 
 
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Created by Mysti Harrison on February 6, 2013

Madison had a pretty eventful birth, we were lucky she is here after all the events. However, we didn't know just how lucky until last summer. You see, Madison has always been 'small', but when she hardly grew for a few years I (her mother) got tired of hearing 'she'll catch up' or 'it's nothing to worry about'. I placed her on a new insurance and insisted on testing. 


Going back a little further, Madison has had some educational struggles since she started school at 5, none of her teachers (she was at a charter home school) would entertain my concerns. When she was 9 I was tired of hearing it, and had the local school test her. She was dx'd with NLD (non-verbal learning disability), dyscalculia and dysgraphia - and the journey began. In learning about NLD I learned many that many (up to 99%) of young girls with a genetic condition called Turner's Syndrome (TS) have it. At the time, I didn't give turner's another thought.

A short while after I began noticing just how small Madison was. Her brother, who is three years younger, was larger than her (they were often mistaken for twins). I began researching and found out about 'mosaic turner's syndrome'. The collegiate in me researched tirelessly. I knew she had it. I found a new amazing doctor who would listen. A week after the blood draw we had confirmation. Madison has Turner's Syndrome, or 'TS'. 

Once we got the confirmation we had to do testing - and lots of it, to get a thorough understanding of how TS affects her. We found out that she has a heart defect (she went 11 years not knowing!). Her official cardiology dx. is bicuspid aortic valve, regurgitation and widening aortic root. Thankfully none of these issues affect her activity at this time. We also found her uterus and ovaries are underdeveloped (common with turner's as only .5% can conceive). We already knew she was incredibly short (at the time of dx she was exactly 4 feet tall, 11 years old). 

What does this all mean? It means Madison has nightly injections of human growth hormones as a means to help her grow and help her bones gain density and prevent long term health issues. It means she meets with an endocrinologist every other month, a psychiatrist every other month, a pediatric cardiologist once a year (for now). She has had blood draws endlessly and has seen renowned geneticist (she has a very unique DNA presentation of TS, no typical 'xx' cells, some are even 'pseudo isodecentic'). 

The long and short of it.The survival rate of TS is a mere 1 in every 2500 pregnancies. One, yes, One. My daughter is a miracle in the true sense of the word.

I am joining 'go fund me' so that Madison and myself and her daddy can try to attend the annual TS conference this summer (Dallas Tx!). She deserves to feel 'normal,' to meet others like her. They have activities to help these young women build self esteem, deal with the medical aspect of their dx. and even to help them deal with the harsh reality that they will not bare children in a traditional fashion (Thank goodness for adoption!). For us parents they have support groups (being a special needs mom is hard, especially when you have medical, educational and psychological struggles to reckon with), informational sessions, new research and so on.

Sadly the plane tickets alone for myself, my husband and Madi will be close to 1300 (rough estimate) the conference will be around 700 (based on last years rates) and we still have hotel costs and expenses like luggage, food and so on. Being a one income family (I am a PhD student) and having two other children, affording this conference will be next to impossible. I thought I should reach out to friends and family and maybe even some strangers and see if I could get a little help in helping my daughter and boosting her up.

A little about Madison - She's 11.5, she is now nearly 50 inches!! (that's two inches of growth since we began treatment). She loves to dance and sing and read and draw. She's really into Japanese animation, too! Beyond that, she's awesome. She is a lovely child, a blessing, and my miracle. She struggles in school, but works so hard to get good grades. I want nothing more than to offer her this opportunity to feel normal - every day she has to reckon with the cross she has to carry, which is much larger in my opinion than any 11 year old should have.

Please consider helping us, if you can't please press share maybe someone else can. Thanks for reading, and I will do my best to answer your questions.
Awareness is key. 

(p.s. February is TS awareness AND heart disease awareness month, wear your purple and red!)

 
 
 
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God has truly blessed your family! As the mother of a Turner's child that didn't survive, it does my heart good to see a beautiful girl like Mysti! Have a great time in Dallas, and I hope you leave with lots of new friends. I wish I could help fund your trip; my husband was in a motorcycle accident (at 70 mph) and spent a week in a Trauma unit. I will be praying for you through your travels, and every day. God Bless you all

posted by Lisa Lee Huckfeldt 9 months ago

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Recent Donations (41)

$1,945 raised by 41 people in 14 months.

$100.00

Anonymous

9 months ago

 

$20.00

Sidney Mortier

9 months ago

 
 

Have a wonderful time...Enjoy!

 

$25.00

Barbara Grow

9 months ago

 
 

A little for the road!

 

$80.00

Anonymous

11 months ago

 

$100.00

Mary Tolle

11 months ago

 
 

Have a great time.

 

$25.00

Anonymous

13 months ago

 

$100.00

Anonymous

13 months ago

 

$20.00

Donald & Jeannie Sa

13 months ago

 
 

$20.00

Kristina Weber

13 months ago

 
 

Being surrounded by others who understand what she is dealing with will be enlightening. Meeting and making new friends will benefit her always!

 

$5.00

Merle Bertrand

13 months ago

 
 

Glad to help!

 

1-10 of 41 donations

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