Independence for Avery- Help me get a Service Dog

Hi! My name is Avery!

I am looking to raise funds for a Service Dog! Service dogs don’t come cheap but having a highly trained animal as my partner would offer me independence again.

My independence is so important to me. I am a rower, I am an artist, I am a costume designer, I am a friend, I am a loved one, and most importantly I am strong.

I am 16 and I have many chronic illnesses. I have a connective tissue disorder, dysautonomia, MCAS, GI issues, and even more! I have had 7 inpatient stays,  just in the summer of 2020 (and you thought hiding from COVID was bad)   I have had 18 feeding tubes that went in through my nose (15 of those I placed by myself at home), and now I have a surgical feeding tube called a G tube. I have undiagnosed gastrointestinal issues, and they make it hard for me to keep food and water down. I need lots and lots of water to maintain my dysautonomia, 100oz! The feeding tubes made it possible for me to get the hydration I needed, but didn’t solve the GI issues.

My quality of life is really affected by my dysautonomia. There are many symptoms I experience that impact me daily:

·        syncope (passing out)

·        presyncope (losing my vision, intense dizziness)

·        tachycardia (fast heart rate)

·        hypotension (low blood pressure)

That’s just to name a few. Most of my symptoms are brought on by a postural change like sitting to standing. I also experience those symptoms when I stand for periods of time.

This service dog would be able to alert me when my heart rate increases and make sure I was in a safe environment in case I lost consciousness. Creating a relationship with my service dog will help me gain my independence so that I can be even stronger than I am right now.
 
I hope you all consider donating, this is a lengthy and costly process, and every cent helps.

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Hi- from Robyn and Chris (or as we are now addressed by all medical professionals- “Mom” and “Dad”)
 
That is one hard act to follow!  Avery is an intelligent, tenacious, spirited young woman, who is an amazing advocate for her own needs. However, she is tired, in pain, and feeling overwhelmed about finding a way to manage her chronic health issues. We are determined to find a team of specialists who can help her to regain her functionality and quality of life.  We are also determined to support her in the journey to get a service dog (Anyone who knows me is probably shocked that I’ve “ok’d” this dog thing).

For us, it’s easy to see what’s at stake!  Every day that passes without proper diagnostics and treatment from physicians who are as passionate as we are (and believe me, there ARE NOT enough), is another day that Avery spends waiting for her independence. While we definitely adore each other, we do not want to be tethered together forever!  We’d like to ask Avery “how was your day?” and not know every second of it already.

We have seen her:

·        passed out because she tried to stand up or bake some cookies

·        placing NG tubes at our dining room table just so she could get enough fluids to prevent her from passing out

·        living with such severe GI pain and nausea, that she can’t eat or drink and is attached to an IV pole

·        in severe Chronic Pain- all day/ every day

·        so hypermobile that she dislocates a joint just moving to grab one of her delicious cookies

·        so fatigued she can’t get out of bed

We have also seen her:

·        Rowing and training like an incredible athlete

·        Working crazy, long hours on and off stage to create amazing performances

·        Babysitting- she’s loved by quite a few kids in our town

·        Doing chores- PLEASE….I want that back!!

We need doctors who specialize in:

·        Ehlers-Danlos Syndrome

·        Dysautonomia/ POTS (Postural Orthostatic Tachycardia Syndrome)

·        Gastrointestinal Issues

·        Chronic Pain

And these specialists and programs are not in our city.  We may need to travel to:

·        CHOP in Philadelphia

·        Cleveland Clinic in Cleveland, OH

·        Cincinnati Children’s in Cincinnati, OH

·        Mayo Clinic in Rochester, MI

***just to name a few***

It took us a while to come to this decision to ask our family, friends and community for support.  But, we would love your help in giving Avery the gifts of independence, knowledgeable and compassionate healthcare providers, and the rich future she truly deserves!

We would truly appreciate any support you can offer. 

Remember, Generosity Makes People Happy (says the therapist)