I may be little, but I am fierce!

$17,426 of $20,000 goal

Raised by 214 people in 28 months
On snowy January 26, 2015, Aviannah Grace was born, but her unlucky journey began at the 20 week ultrasound.  In utero, she was diagnosed with a fatal form of dwarfism.  The options from the professionals were dreadful; terminating the pregnancy or delivering a child who would pass away quickly after birth.  Avi's parents refused to accept these options and continued to seek pre-natal care and work with a geneticist.  The arrival of Avi and her subsequent battling on is nothing short of miraculous.  She was diagnosed with Skeletal Dysplasia (Yup, she's a dwarf) but world-wide there are no genetic professionals that can figure out what type of dwarfism she has.  There are over 300 types of dwarfism, and she hits the genetic markers of none of them.  She is ONE OF A KIND, for real. 

Her primary doctor has made the following statement about Avi:  "Taking care of Avi is a pleasure, but also a challenge.  Her diagnosis remains elusive despite extensive work up including consulation with world leading skeletal dysplasia experts.  Without a specific diagnosis we cannot anticipate Avi's possible needs and she continues to develop new difficulties and medical diagnoses.  Avi's medical team includes a plethora of physicians including neurosurgery, genetics, ENT, pulmonary, orthopedics, neurology, and urology, in addition to many therapists, an audiologist, and an pedorthist.  Luckily Avi has an extremely loving and dedicated family.  They are incredible advocates for her and miss a lot of work to get her to appropriate appointments."  Dr. Legare, Director Midwest Regional Bone Dysplasia Clinic. 

Fun Fact:  She loves Cheetos.  LOVES THEM.  Though she has many speech issues, she is able to say "Cheeeeeee-tooooooow" very clearly. 

Her diagnosis, or lack there of, means that many of her medical claims can and are being denied.  She has had 42 days in the NICU, 15 days of ICU, 56 therapy sessions, 11 surgeries, and the thousands of miles traveled back and forth to doctor appointments.  Her medical bills are quickly approaching the 1 Million dollar mark. 

The mileage, apptointments and hotels have taken a toll on Avi and the family, but their hopes for a diagnosis remain high. 

All the King's horses and all the King's men (and geneticists) are working on Avi,  but resources are running short.  Avi is being evaluated for spinal problems, bladder issues, speech and hearing issues.  Right now, and most noticeable, Avi cannot walk.  In fact, she was walking with the help of a walker for just shy of 2 months but has resorted back to crawling because of the deterioration of the stability to her lower legs and feet.  Insurance will not cover the recommended treatment because of a lack of diagnosis.  This is the primary reason this account is being set up.  Her family is asking for assistance for her needed treatment and covering the uncovered medical costs and travel required to get this little peanut to all of her appointments. 

Any donation is appreciated, and 100% of your donation will go towards paying for hospital, specialists, physicians, adaptive medical equipment, home modifications, and the out of pocket expenses associated with this "1 of a kind" child.  A dwarf sized amount of your donation will be used for tiny bags of Cheetos.
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Update #16!

I can not believe that we started this campaign just over a year ago! We continue to be so grateful and amazed by all the support we have received, and just how far Aviannah has come these past 12 months. It's unbelievable. Thank you to everyone for your support, prayers, belief in Avi, financial gifts, and helping us to raise awareness. We are so close to reaching our goal.

Our last update was around Christmas time and Avi told Santa that she wanted to "walk." Her dream and our family dream has come true! A few weeks ago, on March 13th Avi had her final pair of casts removed and her new AFOs (braces) put on and she WALKED herself (with the help of her Melissa & Doug shopping cart) right out of the surgeon's office! For years we have been receiving our medical care at American Family Children's Hospital in Madison, Wisconsin and Avi has NEVER walked inside the hospital walls. Until March 13th - it was amazing to witness!

To see this was so impressive. We have been working towards this day for so long. Avi has persevered thru 14 sets of casts; 3 pairs of night time Ponsetti shoes and Dobbs bars; 3 pairs of AFOs; 1 set of SMOs; a pair of PRAFOs; a set of casts shoes; and one pair of shoes. All of that coupled with 3 of her surgeries to get to where we are now. Unbelievable.

We were also asked to participate in a photo session with a truly talented photographer, Tianna Gries Photography. This was not a typical photo session, but rather one that Tianna wanted to gift to our family to showcase Avi as Wonder Woman! Wonder Woman is described as an "unconquerable warrior" and I whole heartedly believe that the same can be said for Aviannah. We are thankful for Tianna and this priceless gift.

We also recently had another ultrasound and check up for Avi's kidneys. The good news is that they appear to be stable, so we can continue with the 3x day medication. We have been cleared for 3 months before we need to do any further testing - it is our hope that we will eventually get to take 12 months between kidney checks, but we are thankful for this reprieve.

We are looking forward to the warmer weather and to see Avi walking around outside and enjoying the accessible playground we built last summer. I am confident that we will spend so much time outside enjoying our family time now that she is stronger and healthy.

We are hoping to be able to purchase a therapeutic whirlpool bathtub and remodel the bathroom to make it more accessible for Avi. Our wish is to be able to do hydrotherapy for her at home. We know that she is at high risk for having the contractures come back in her feet, which would paralyze her from walking. Doing therapy in a therapeutic tub would help relax her muscles and allow us to continue to stretch and strengthen her lower legs and feet. Seeing her gain independence in the bathroom including being able to wash her hands or brush her teeth would be remarkable.

Again, thank you for your support. Until the next update, we will be practicing our WALKING!!!

Walking out of the doctors office!
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Update #15 - Can you believe it?!?!?

This last month has been a whirlwind of progress and excitement and we are so glad to have the support and of all of our family and friends. Thank you to each and everyone of you for your kindness, monetary gifts, and the gifts of prayer and good thoughts.

We would like to give a special shout out to Avi's cousin {and her parents} - who just turned THREE! In lieu of a birthday gift for the three year old, donations were made to Avi's account. What an incredibly kind and thoughtful gift!

As stated in previous updates it has been a LONG process with getting Avi to be able to stand and walk, and while we are not there yet, we are getting so close. Today I received the phone call that we have been anticipating for MONTHS.... SURGERY is SCHEDULED!!! There is a tremendous amount of excitement buzzing in our household right now, but I'll be honest, there is some fear lurking in the back of our minds as well. Our surgeon has thought thru this surgery I'm sure countless times, Avi's records have been reviewed by 2 other orthopedic surgeons from across the country and they have all collaborated together. Avi has had several rounds of imaging, office visits with pediatric neurologists, and the list goes on. While we know the primary things that will be done, there are some things that we won't know until the surgery is in progress.

Avi has already had a heel cord lengthening surgery, when she was just 5 months old and her recovery was excruciating - so the thought of doing this again makes me nervous and anxious. I am hopeful that this time it will be better and I am going to continue to think about Avi walking to get me thru the anxiety.

Shortly before Christmas we took Avi and her brothers to see Santa. When asked what she wanted for Christmas, Avi replied "walking." Well, Christmas has come and gone, but Avi's THIRD BIRTHDAY is just a few short weeks away, and while she won't be walking that quickly, it is right around the corner.

THREE, I can't believe Aviannah is going to be THREE at the end of this month. This little girl, who we were told to abort or beginning planning a funeral for - she is going to be THREE!!! She is strong, determined, stubborn, fierce, beautiful, and has a spirit like I have never witnessed before. Aviannah Grace, you are a miracle, and you make me so proud each and every day.

As our family plans for Avi's 14th surgery, please continue to keep us in your thoughts and prayers - they are truly what gets us thru the darkest moments.

Attached is a short video that was captured on a Go Pro camera that Avi was wearing on her head. While the video may not look like much to many, this is HER world. She goes so fast, even with those casts on (you can hear them thumping on the ground). These images are what AVI sees - for the first THREE years of her life - her vantage point was that of 12 inches off the ground. Sure, she had a brief stint where she was walking and was a bit higher, but that didn't last long. Imagine only seeing things from that viewpoint. When she's crawling, she can't even see the part of the chair that we sit on, clearly can't see the table tops, and watch to see just how far away door knobs are. I will say, we do have artwork (hers and her brothers) hanging right above all of the floor trim, to give her some visual stimulation. I just wanted to share what Avi "sees" - how the world and all the things in it look - far away, unattainable, not accessible.... but, when she's upright and walking - oh, how her world will open up and she will see so many new things, things that will be so exciting to her - I just can't wait!!!

As always, thank you for all the support! We are getting SOOOOOO close to our goal. Big hugs.



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Update #14 is here!

Once again, I need to start with a heart felt thank you to everyone who continues to support us thru their prayers, well wishes, hugs, phone calls, financial support and everything else. You are all so amazing and we don't take you or your support for granted! If you haven't found us on Facebook yet, please "like" and "follow" us at Avi's Adventures - where you will find more frequent updates and pictures!

Thanksgiving week is here and tonight I take time for reflection and gratitude. Aviannah is a blessing and we are so honored to have her in our lives.

For the first time in 10 days, Avi has not had a fever and had a glimmer of her spunk back. The snuggles over the last week have been incredible, but I am so happy to see her on the mend. With temperatures over 106, we were scared. Avi has an incredible medical team, made up of her local pediatrician and all our specialty providers in Madison. Thankfully, we were able to figure it out, without a hospital admission and fingers crossed that the medications will help.

Last week Friday, Avi was at American Family Children's Hospital for the LONG awaited EMG testing. This is the first of two tests that her orthopedic surgeon wanted completed prior to setting up surgery. Unfortunately, the results were not what we were hoping and praying so hard for. We learned that Avi has no muscle function below her knees. The nerves in that part of her body simply do not work, meaning that they can not send signals to her lower legs. I am grateful that we found this out now, prior to surgery, but this news saddens us greatly.

With this new information, that no one was expecting, we now need to get our pediatric neurologist back in the loop, before our orthopedic surgeon will move forward. December of 2016 is when we met with the neurologist for the first time - to start the process of Botox to get her walking, and now nearly 1 year later we still have the same goal - walking.

In the last year we have consulted with so many providers to help us achieve the goal of walking. Starting with neurology (getting Botox), orthopedic surgeons, neurosurgeons (back surgery), urologists (kidney function - related to spine surgery), and countless hours of physical therapy.

Avi also has an MRI scheduled for the end of the month. At this point, we are not sure if we will keep this appointment - depends on if we can get into to see neurology before then, and what their thoughts are. Also, since Avi has MRIs under full sedation her infection needs to be cleared up, so the timing will be close with her antibiotics.

Even with all this unexpected news, we are trying very hard to focus on all the blessings we have. For the most part she is healthy! We have not had any issues with her reconstructed trachea and everything has healed well with her spine surgery. Those are very big successes for us!! And while it is never fun to see Avi not feeling well, it was nice to have a little break from her therapy appointments (although we did see the pediatrician twice).

So, this week we will focus on the blessings around us. We will continue to be grateful for all of our supporters/followers who are cheering us on and raising awareness for not only Avi, but the entire dwarfism community. We will continue our gratitude for our medical providers, who despite being confused over and over again are determined to provide the best and safest care for Avi.

Cheers!
All snuggled in and waiting for Dr
say your prayers!
silly girl
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Update #13

Once again, I need to start with a heart felt thank you to everyone who continues to support us thru their prayers, well wishes, hugs, phone calls, financial support and everything else. You are all so amazing and we don't take you or your support for granted! If you haven't found us on Facebook yet, please "like" and "follow" us at Avi's Adventures - where you will find more frequent updates and pictures!

Over the course of the last month we have been eagerly waiting our appointment with an orthopedic surgeon in Madison. Today was THE day of our appointment - 75 days after the Botox stopped working. The last 10 weeks have been filled with a sinking helpless feeling, wanting to do more, wondering what more we can do, wanting to stay home full time and do more therapy, and going over all the things we have done to get her walking.

Yesterday, it dawned on me that it has been 3 years since we learned of her club foot diagnosis (discovered at our 20 week ultrasound) and we have had a goal of getting her to walk for THREE YEARS!!!

Today we walked in with high hopes and expectations. The surgeon we met with was well informed of Avi and all of her "Avi-isms" and it was clear that he has talked with some of our other providers. He did his examination of Avi. Unfortunately, he is just as unsure as the rest of us. The GOOD news is, he is willing to do surgery. The SAD news, is just not right now. He wants us to do further testing under full sedation, which is always risky, but the hopes are that we will get a more clear picture of what may be going on. As I reflect on todays appointment, I do have gratitude that he wants to understand the "cause" of why Avi's lower legs and feet are behaving the way they are. I have gratitude that he doesn't want to just go into surgery blindly. I have gratitude that he wants to do what is BEST for Avi and that he is optimistic that by waiting a little longer, the outcome of the surgery will be longer lasting. I can't help but be slightly filled with grief, knowing that every other time we have looked for the "cause" with Avi - we have come up empty handed.

I walked into the appointment hoping to leave with a surgical appointment set, with a date that would hopefully be the beginning of Avi's adventure in walking. We did not leave with that. We left knowing that more coordination needed to take place and another sedation event would take priority.

My mind knows that this makes sense, my heart is heavy because I will continue to have a little girl who says "legs no work," even if it's just for a few more months. My heart sinks a little bit every time Avi says "Avi running" and she crawls as fast as she can around the house. She thinks she is being funny and don't get me wrong, it is really adorable and incredibly sad at the same time.

So, tonight I will go to bed, and I will once again dream of Avi walking and being free of pain in her feet. Perhaps tonight it will be a little bit sweeter, because I know that we are hopefully one "step" closer to that day. Right now, the only thing that we know that alleviates the pain is hydrotherapy. We are currently trying to raise funds to purchase a hot tub for our home so we can do the therapy multiple times per day. Not only will this help with her feet, but also the early onset of arthritis.

We will continue to choose to focus on the positives, and we will honor our feelings of sadness, grief, and frustration because that is where we will learn and it will motivate us to keep strong. At the end of everyday, I need to answer to Avi and today I can say that I did everything I knew how to do, and I promise I will do the same tomorrow. Stay strong, baby girl.

Matching shirts in the waiting room!
playing while waiting
listening to the Dr.'s plans....
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Read a Previous Update
Gene Kent Sr.
24 months ago
1
1

like to send a donation but dont have an address and we dont do go-fund-me

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Rose Ault
27 months ago
1
1

Avi is one of my beautiful great grand daughters. She is carrying a v ery heavy cross for one so young. I am asking for prayers for her and her family to help bear this cross and for her health to improve. Also this whole family would appreciate any financial help you can give so she can continue to get the medical help she needs to get healthy. Thank you and God bless you.

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Beth Pease
28 months ago
1
1

http://www.shrinershospitalsforchildren.org/en/contact Pease contact them. I'm not sure but I would think we are able to help in some way.

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Liz Cina Ghilardi
18 months ago

Wow!!! That girl can move!!!

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$17,426 of $20,000 goal

Raised by 214 people in 28 months
Created March 20, 2017
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AL
$25
Anne Lemke
5 months ago
JR
$40
Jason Ring
5 months ago

I was born with spondylometaphyseal dyxplasia 41 years ago. Sky's the limit for Avi!

RS
$20
Ryan Saltz
7 months ago
FD
$10
Frank & Dee
14 months ago (Offline Donation)
CJ
$200
CJ Janus
14 months ago (Offline Donation)
CJ
$100
Chad Jernberg
14 months ago
CH
$100
Crystal Heeg
15 months ago
SC
$25
Susan Conzelman
15 months ago

Avi Wonder Woman is awesome! In the photo and in real life.

$50
Liz Ghilardi
16 months ago

Avi is such an inspiration!!! Love following her on Avi's Adventures!!!

$100
Kay Hebert
18 months ago
Gene Kent Sr.
24 months ago
1
1

like to send a donation but dont have an address and we dont do go-fund-me

+ Read More
Rose Ault
27 months ago
1
1

Avi is one of my beautiful great grand daughters. She is carrying a v ery heavy cross for one so young. I am asking for prayers for her and her family to help bear this cross and for her health to improve. Also this whole family would appreciate any financial help you can give so she can continue to get the medical help she needs to get healthy. Thank you and God bless you.

+ Read More
Beth Pease
28 months ago
1
1

http://www.shrinershospitalsforchildren.org/en/contact Pease contact them. I'm not sure but I would think we are able to help in some way.

+ Read More
Liz Cina Ghilardi
18 months ago

Wow!!! That girl can move!!!

+ Read More
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