Addilynne's Army Uniting

$11,220 of $40,000 goal

Raised by 124 people in 23 months
Amanda Hirzel Shirey  LAKEWOOD, OH
This is our 3 yr old daughter, Addilynne. At two months old our world was shattered when she was diagnosed with Spinal Muscular Atrophy type 1. SMA Type 1 is the most severe form of SMA. Addilynne is FOUR AND A HALF! What an accomplishment! She had only a 10% chance of seeing her second birthday, but she beat those odds. She’s such a fighter. Spinal Muscular Atrophy, Type 1 is her foe. Addie attends preschool this year. Because of her susceptibility to germs, Addilynne has a robot taking her place in class during the present flu season. She would much rather be with her peers, but a simple cold could soon turn into pneumonia and have her fighting to breathe/live. Given her respiratory difficulties it is much safer for Addie to communicate with her class via technology for now. The teachers and students alike are so supportive of Addie and are anxious for spring to come, and for Addie to return to school. Addilynne has a trach which helps her breathe, and she is fed through a G-tube. She endures respiratory treatments several times a day to help keep her airways clear since she is unable to cough or swallow on her own. Thanks to the injections Addie has been receiving during clinical trials for Spinraza (nusinersen), Addie IS getting stronger. She has been able to lift and use her arms and hands, she can bend and lift her legs, she can roll almost completely over, she is gaining head control, and, with minimal support, she can sit for a short while. Addie is a determined little girl! The medicine responsible for her gaining, not losing, muscle strength has just recently been approved by the FDA and will soon be available for all SMA individuals. Addie helped to prove that the medicine was safe and effective. What a trooper. While Addilynne cannot speak, she does communicate. She knows some sign language, and is starting to use a communication device. She is also quite adept at gesturing and using her eyes to indicate what she wants. She has proven time and time again that while her body may be weak, her mind has not been affected. She is very intelligent and enjoys learning new things. She also enjoys playing with the same toys and taking part in the same activities as other three year olds do. Things may have to be modified for her, but her family makes sure that this little girl doesn’t miss out on any experiences or adventures. The one thing that the family has been unable to help Addilynne with is providing her with a room of her own. For the past three years, the family’s living room has been Addie’s bedroom. It is here that Addie sleeps, plays, and has her therapies. All her machines, supplies, and special medical equipment are housed here and in the dining room. At the same time, it is also the only ‘living space’ for this family of six. Addie is completely dependent on others to bathe her. Up to this point, her mother has been bathing her in a baby bath tub in the kitchen sink. It is a difficult task, and one that gets more difficult as Addie continues to grow. She has come to expect the baby tub to tip during bathing, which causes her great anxiety. Addie needs a bedroom and a bath that can accommodate an individual with physical limitations. The city they live in is Addilynne’s home. She and her family enjoy living there. It is small enough that you know your neighbors, but large enough to have everything that you need within walking distance—schools, churches, parks, swimming pools, grocery stores, drug stores, restaurants, doctors’ offices, etc. The family has tried unsuccessfully to find another home in locally—one that has a first floor bedroom and bath, as well as a driveway large enough to get Addilynne in and out of her van, and one that is affordable. They have decided that they will have to add on to their present home, but this too is quite expensive for this single-income family. At the beginning of 2015, after hearing about Addilynne, the owner of a construction company had promised to build her a bedroom, therapy room, and bath. We met with him a number of times. He himself was a paraplegic as the result of an accident, he said. He purported to have many people who were willing to donate materials, with his company doing the labor. Unfortunately, after waiting for more than nine months for construction to begin, the man was exposed on television as a dishonest person who had faked being disabled in order to collect disability. His offer to build the rooms was also a lie. Now we are trying to raise money toward an expansion of the home so Addie can have a room of her own which is not in the middle of the family’s living space. We appreciate any and all help that we receive. If you are not able to help financially, we would love to be kept in your prayers. For more on Addilynne, please check out her page on Facebook: Addilynne's Army . Or for more information about SMA, please visit Curesma.org. 
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Update 4
Posted by Amanda Hirzel Shirey
10 months ago
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Sorry, not sure why this didn't post with the update. Addie's toy store is open for business with all the newest toys!
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Update 3
Posted by Amanda Hirzel Shirey
10 months ago
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Addilynne built a toy store with her own two hands and even made the sign! If only building Addie's room was this quick and easy! We started in November and have been living in construction since. It has been very slow progress with many lulls in between. Our amazing builders have been trying to get as many supply donations as they can to make this room possible, unfortunately they haven't all come through. Every little sound that comes from that room makes Addie light up! She proudly conveys to everyone that it is her room! She has chosen the color pink (and what a pink it is!) for the walls...maybe an accent wall :) . She also is super excited about her Frozen shower curtain (Anna is her absolute favorite).
We have been so blessed with donations and well wishes. We continue to pray that it will all work out. Please continue to share and donate if possible. We are forever appreciative and wish everyone a joyous Easter.
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Update 2
Posted by Amanda Hirzel Shirey
20 months ago
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Today my heart was bursting with pride! The many people that we passed likely had no clue what A HUGE milestone they were witnessing or that the momma pushing the cart was on the verge of tears of joy. The simple act of pushing my girls in a cart made my entire day (even more really)! As I drove there, knowing they didn't have a Caroline's Cart, I tried to determine the safest way to run our quick errand that she wanted to come on so badly. Should she lay on a blanket in the cart, could she sit in the seat with her sister guarding her head from behind? I decided to attempt this cart with two seats. I was a bit nervous but knew we only had a few items to grab. She did so amazing that we didn't even rush! She held her head up like such a strong girl. It definitely wasn't easy and she couldn't turn to look all around. But she was beaming with pride and enjoyed the experience so much! She got a cookie from the bakery and tried to grab at the candy like a typical 3 yr old! Such "little" experiences but ones I never thought we would have. Moments like this are why we have made so many sacrifies to participate in the trial. Her progress is slow but we are beyond grateful for it all. Praying all those starting the same drug (now FDA approved) and those still wading through the red tape and insurance opposition, get to experience these "little" moments, too <3.
We continue to try to raise the funds to give our daughter a real bedroom (instead of half the living room) and a safe place to bathe. Please continue to share Addilynne's Go Fund Me, donate if you are able and most importantly remember her in your prayers. Thank you! If you know anyone that is in the position to donate materials for our construction, those would also be great appreciated!
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Update 1
Posted by Amanda Hirzel Shirey
23 months ago
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We are blown away by everyone's generosity! Thank you so much! Addilynne is heading the 8 hours home from the clinical trial she participates in, in NY. She had a rough morning so hoping she takes a little nap. Also praying for a safe trip home. Enjoy your day!
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$11,220 of $40,000 goal

Raised by 124 people in 23 months
Created February 20, 2017
Amanda Hirzel Shirey
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