How many times have you heard or seen something that makes you uncomfortable but you just tried to pretend that it didn’t exist?
I, for one, am guilty of this. I tried to pretend the things I was reading on my friend’s Facebook page about what her and her family were going through weren’t real. I couldn’t believe it. I didn’t want to believe it. Today, I’m asking you to go through their story and put yourself in the shoes of this family. I’m asking you to do this so you can help prevent other families from going through something this hard.
Here is the story of Avery “brAvery” Heino:
Avery was born on July 1, 2012. She was born normally and healthy. She was perfect. From the moment she entered into the world, she looked just like her daddy, her favorite place was in her momma’s arms and she was adored by her older sister Ella. Those things remained constant as she grew older.
Her parents noticed slight delays in her gross motor skills, speech skills and some fine motor skills around 9 months. Avery’s mother, Dana, works with children and adults with Developmental Disabilities on a state funded Medicaid program so she’s familiar with signs and symptoms of developmental delays. These concerns were brought up at Avery’s 6 month, 9 month and 12 month Well Baby checkup appointments with Avery’s (now former) pediatrician. They were dismissed and brushed off after repeated attempts by Dana to be taken seriously. By 15 months, Avery still wasn’t walking or talking so Avery’s pediatrician finally agreed that perhaps a specialist should be seen.
Her family started working with a developmental pediatrician, who diagnosed her as having mild Cerebal Palsy due to her global gross motor and speech delays. Avery started working with Prince William County’s Early Intervention program and over the next 6 months made great progress. She learned to walk, she learned sign language, she started trying to talk, she was beginning to use utensils, she playing appropriately for her age and with her toys. It was incredible to see how much progress she was making in such a short amount of time. Her parents knew that she may always have some delays but it seemed like she would certainly have a very typical life.
Around the end of May, Avery started exhibiting weird behaviors. She would occasionally tilt her head to one side or pull on her ear. Then she would stop and continue on with what she was doing. She also started losing her balance more and falling down more frequently. Avery was INCREDIBLY strong willed and independent. She would insist on doing things alone and did not want help from anyone, even when most of the time she needed help due to her delays with certain skills. Since she was falling down more and more though, she began to ask for help with walking or would want to hold hands more. This behavior was more unusual for her than before. Dana noted these things and was going to bring them up to her doctor in a future appointment at her upcoming 2 year well checkup or if they got worse.
On June 3, 2014, Avery went to her first doctor’s appointment of what would end up being 8 different medical appointments before she ended up hospitalized from what would be a brain tumor. She started off with what her parent’s thought was a nasty cold. She had a bad cough, a lot of upper chest congestion, wheezing and stridor breathing (a very high pitch breathing sound caused by a blockage in the throat) but no other symptoms. Dana took Avery to a Patient First clinic that night because her breathing sounded awful and she couldn’t sleep at all. Patient First ran a series of chest x-rays, said she didn’t have pneumonia, said it was a bad virus and sent her home. Dana had brought up the weird behaviors with her head (head tilting and pulling on her ear) thinking maybe she was getting an ear infection but her ears looked good. Over the course of the next 4 weeks, Avery’s “virus” worsened. Her breathing symptoms got worse. Dana took her to her pediatrician twice, back to Patient First again, to the ENT to ensure her ears weren’t infected and the tubes in her ears were ok, and to the hospital for a set of throat/chest x-rays to make sure she didn’t swallow something or have an obstruction of some kind. Every doctor Avery saw just kept saying she had a bad virus and that she would get better. Dana kept fighting with them and insisting that something was going on with her head or ears because she wouldn’t stop with the behaviors and her balance was worsening. She had gone from walking completely independently to wanting to hold hands to cruising on furniture and finally sometimes she would even crawl again. She was also covered in bruises because she kept falling down so much.
Finally, on June 22, 2014 Avery started vomiting. The day before she had been at a joint birthday party for both Ella and Avery. Avery had missed the whole thing because she was so sick and slept through it. The last real food Avery ate was birthday cake from her birthday party on the 21st. By the 23rd, Avery was so lethargic and dehydrated she couldn’t even sit up. Mike and Dana took her to Prince William Hospital’s (now Novant Heath System) Emergency Department. They ran a series of tests, x rays, blood work, gave her fluid and medications. They said she tested positive for a virus called RSV – Respiratory Syncytial Virus – which is a virus that is most often found in young infants and children and can be very serious. It’s most common during winter months and cold/flu season – not the summer time. The hospital gave the family nausea medicines and nebulizer treatments and sent them home.
Avery continued to vomit and woke up with no wet diapers. After a call to her pediatrician, they recommended she go back to the Emergency Department. Her parents and grandparents took her back. Prince William Hospital ED staff did a lot of the same things and wanted to send Avery home again that evening of the 23rd. Dana refused to leave. She was very angry and frustrated and insisted that something serious was wrong with her daughter. She wasn’t just going to keep bringing her home and then bringing her back in the morning for fluids. After a lengthy argument with the one pediatrician on staff, it was decided that Avery would be admitted to the hospital.
Avery received bags and bags of IV fluids, multiple anti-nausea and anti-vomiting medications, nebulizer breathing treatments and multiple medications to relieve constipation. She continued to vomit profusely. She would only lay in the crib on her belly with her head turned on her left side. She couldn’t even be rolled over for diaper changes without vomiting. The nurses were putting her diapers on backwards so they wouldn’t have to roll her over. She was vomiting bile. It was awful. The hospital staff still insisted that her issue was having a bad case of RSV and constipation. Every day Dana and Mike asked if they needed to go to a different hospital but were told she was being treated fine at Prince William.
Some things you should know – and granted, things could have very well changed since their time there in June 2014…hopefully they seriously have. That hospital is not equipped to handle inpatient pediatric cases. Their policy should be to triage and transport but unfortunately it isn’t. They had one pediatrician on staff for the entire hospital at a time. That’s the Emergency Department, all new babies born without their own pediatrician to see them and any inpatient pediatric patients. Avery wasn’t seen for “rounds” until the evening when the daytime pediatrician would be leaving for the day. Any questions or concerns her parents had weren’t answered until late in the day because the doctor was stuck in the ED all day with emergencies. The inpatient pediatrics rooms are literally 3 doors down from the post-partum rooms of the hospital – Avery’s room was literally down the hall from where she was born. For a child with a supposed case of RSV who is in isolation and staff has to where gowns to enter the room, it seems like a serious infection risk to put them just a few doors down from new moms and newborn babies. Dana and Mike voiced their serious concerns about Avery’s worsening health issues and the fact that their diagnoses did not seem appropriate multiple times a day. They were grossly ignored. They repeatedly asked for head imaging. In fact, the doctor on staff each day wanted to discharge Avery DAILY for 5 days – even though her condition was not improving but worsening.
Finally on the evening of June 27, 2014, Dana became furious with staff trying to discharge Avery. She refused to leave and demanded they either transfer Avery to a bigger children’s hospital or call security and physically and forcefully remove both she and Avery off hospital property. The doctor came in to help calm things down and decided to try one more thing. Dana said she had till the morning to figure out was wrong with Avery or begin working on transfer orders. The next morning, June 28, 2014, Dana was sitting with Avery and talking to her. That’s when she noticed that Avery’s eyes started moving back and forth rapidly, a condition called nystagmus. After calling the nurse in, Dana demanded a cat scan done. The nurse said it could be a side effect of a medication or part of Avery’s cerebral palsy diagnosis. Dana insisted both things were completely wrong – Avery hadn’t had any medications for over 15 hours and she didn’t have any neurological symptoms relating to her CP diagnosis. She wanted a CT scan done and she wanted it done now. It was finally ordered. Mike went down with Avery to the scan and Dana waited in the room. Before they even returned, Dana noticed the doctor was in the hall at the nurse’s station making multiple phone calls. She looked a bit frantic and panicked. When Mike and Avery came back, the doctor was right behind them. She said, “I have the results of Avery’s CT scan already. There’s a mass in Avery’s brain. We’re transferring her to Inova Fairfax Hospital’s PICU immediately. As soon as possible. I’m making arrangements now. I’m so sorry. That’s all I know.”
June 28, 2014. That day changed the Heino family’s life forever. Avery was transported by ambulance to Inova Fairfax Hospital. When everyone got there, it was like a movie. There were teams of people everywhere. They immediately hooked Avery up to an IV drip of morphine. Dana asked if they thought she was in pain and the PICU doctor, Dr. Davenport, replied, “Absolutely. She’s probably in an intense amount of pain.” Dana and Mike met the teams of people that would be working with Avery. Dr. Leon Moores would be Avery’s lead neurosurgeon. He would go on to complete 8 brain surgeries on Avery and save her life several times. He also really bonded with her and they developed a very special relationship. Dr. Jeff Knipstein would be her lead oncologist because his specialty is pediatric neuro-oncology. It would turn out that Dr. Knipstein had specialized in AT/RT during his fellowship, even though it’s such a rare cancer. Both men would prove to be such an invaluable member of Avery’s team and Dana feels in the bottom of her heart that Avery wouldn’t have made it as far as she did or have progressed as much as she did without either one of them.
It was determined that Avery would have a full brain and spine MRI on that Monday, June 30, 2014 that would last about 4 hours. She’d be fully sedated for the procedure. Then Mike and Dana were told she would have brain surgery on July 1, 2014 – her second birthday – that would last anywhere from 14 to 18 hours. At first, they were concerned about them doing the surgery without even knowing what they were dealing with and thought maybe they should wait until the results were complete from the MRI before scheduling anything. Dr. Moores grabbed Dana’s hand and said “I know you’re scared but you have to trust me. Do you see your daughter over there? Right now, she’s dying. The mass in her head will kill her if we don’t take it out. It doesn’t matter what it is. It has to come out.” Obviously that solidified the plans for surgery. After the MRI, the mass showed to be solid and about the size of a lime. It had also metastasized to her lower spine, L4-L5, with a small spot.
Avery was in surgery for 16 and half hours. The tumor was about the size of a lime but they were only able to get about a third of it because it was so stuck to so many important nerves. All of the wheezing and breathing issues that she had been exhibiting earlier in the month were because the tumor had paralyzed one of her vocal cords and she was aspirating secretions. She ended up needing a tracheostomy. Due to needing the trach, she required a gastrostomy tube (G-Tube) for feeding. The loss of balance, head tilt, ear pulling and eventually not wanting to lift her head up at all was because of the extreme pressure and fluid buildup the presence of the tumor was causing. The tumor eventually caused permanent damage to the way that her spinal fluid flowed through the fourth ventricle of her brain so Avery required several different surgeries for shunts in her brain to assist in draining the fluid properly. She had a medi-port placed under the skin in her chest as an access point for giving her IV chemo or drawing blood and she had a port put in her head to be able to give her chemo directly into her spinal fluid. After her first brain surgery, she was in the PICU for 65 days and on the HEM/ONC (hematology/oncology) unit for another 11 days before she got to go home for the first time. During her entire 10 month course of treatment, the longest she was ever home at one time was about 10 days.
During Avery’s initial brain surgery, a biopsy was taken of the tumor and sent to pathology for diagnosis. AT/RT is very rare, highly malignant, aggressive, fast-growing tumor. Based on the size of Avery’s tumor and the fact that it had already metastasized to her lower spine when we found it, her doctors estimate that it started growing about 6-7 weeks before diagnosis. AT/RT has historically low prognosis rates – typically the younger the child, the lower your survival rate. Children under age 3 usually have a prognosis rate of under 10%. There are generally fewer than 50 cases a year of AT/RT diagnosed in the United States. There’s also a genetic component to AT/RT – most cases of AT/RT occur because there is a deletion on Chromosome 22 of the SMARCB1 gene. Avery was missing this gene, too. However, during extensive genetic testing, it was discovered that Avery was missing this gene because she had a mutation of her 22nd chromosome called Ring 22 Chromosome where her chromosome is in a ring shape instead of the normal shape. Also, due to her ring shaped 22nd chromosome, Avery had another chromosomal deletion. Avery was misdiagnosed with Cerebral Palsy. She actually had a genetic disorder called Phelan-McDermid Syndrome that has similar symptoms as CP and without genetic testing can present as CP and/or Autism. Neither Ring 22 or Phelan-McDermid Syndrome had any effect on Avery’s cancer diagnosis but they were things that would need addressing later in life.
Since Avery has been diagnosed, I had made a point to write Dana to check in to see if she ever needed anything. Dana is extremely strong and has been the most inspiring mother I have ever met. Dana has learned every piece of medical equipment in her house for Avery. She knew exactly what Avery needed at every moment. It was truly awe-inspiring to see. So, as you can imagine, Dana had everything covered. On February 25, 2015, I reached out to Dana to see if she needed anything and to make sure she was okay.
“Me: Hey Girlie! I am checking in on you. How are you doing? Need anything? Don’t be afraid to ask!
Dana: Hey! Thanks for checking on me. I really appreciate it. I’m ok. Hanging in there. Actually – do you work tomorrow? I know you don’t always 5 days a week. Avery has a clinic apt. in Falls Church at 930. I have to have to someone drive us in case she needs help with her trach. I’d need to leave around 8-815a. Her apt. shouldn’t be more than 30-40 min. If you can’t, no worries! I don’t have a nurse tomorrow so I’m just looking for someone to ride with me.
Me: Hey! Yes I can tomorrow! I can be at your house at 8am.”
Once I arrived on Friday the reality of what my friend had been taking on hit me. We got in the car and we headed off to Avery’s appointment. I am listening to Dana update me on what she has really been going through for the last 9 months. We get to the appointment and I’m hearing a lot of things that honestly I don’t really understand, but as I sit there I’m watching Dana rattle off medical terms as if she has been practicing medicine for years. As I look over, I am watching Avery tear up tissues and throw them around to entertain herself during the appointment. It all really hit me in that moment. No one can truly understand pediatric cancer until they’ve spent a day with families fighting it.
We finish the appointment and head back home. While I am listening, I am learning. The chemotherapy protocol Avery is on is for Atypical Teratoid Rhabdoid Tumors (AT/RT), a type of brain and spine tumor. Some of the chemo drugs Avery receives on this protocol are the same chemo drugs that children with Leukemia and other cancers could be on. They only have 10 chemo drugs available for childhood cancers. You read that right… only 10… and most were developed 30, 40, 50 plus years ago.
As I listen to Dana talk about pediatric cancer, I get more and more frustrated. The National Cancer Institute only allocates less than 4% of it’s funding to pediatric cancer research. This isn’t just governmental funds. This is money from tax payers. My heart breaks more and more. That’s when my mind begins to start turning, “How can I help?”
Days after the appointment, I am still stuck on how much information I learned from Dana. I kept thinking about the image of this beautiful 2 year old playing with tissues, while her doctors and Mom discuss her next steps. My heart hurts and I realize in that moment, images make you really feel something. Images help you see the reality. Dana shares plenty of photos of Avery on Facebook and Instagram but she obviously doesn’t share everything. In fact, she leaves so much out. People need to see this. I need to do a photography series on this. I decided I needed to reach out to Dana.
“Me: Hey! So I was really thinking about the visit I had with you recently. It’s been something on my mind for the last couple of days. More importantly how there are no children cancer funds that are developing further. I had an idea and I want your input on it. What about me following you around for a photo series called “The day in the life of Pediatric Cancer”? The basis would be you live your normal day to day and I am quietly in the background documenting it. Once the photo log of the day is complete, we post a series online about how difficult it is and how hard this cancer is on Avery. At the end of it we urge people to go and donation to the cancer program of your choice in Avery’s name. It will bring attention to Avery’s story, while making people see how much of a change it is.
Dana: Honestly I think that would be great. The most impact would probably be when we’re in the hospital and she’s going through treatment bc that’s the hardest time. Or you could do photos of home and hospital. I’m fine with both. I would really also just love pictures of us in our everyday life. That would be awesome. Thank you”
This was the beginning. We decided I would do a 12 –hour day at the hospital while Avery is getting her high-dose round of chemotherapy before her stem cell transplant. This would actually show others what it truly looks like to live in the world of pediatric cancer. We set the date – March 18th, 2015.
As I arrive to the hospital, I’m truthfully nervous. I want more than anything for this to be a learning experience for others. I want more than anything to do right by Avery. I arrive to the room around 7:45am. Dana and Avery were sleeping. I didn’t want to wake them up, so I decided to step outside. About 15 minutes later I get a text from Dana that they’re awake and I head in. You would never know Avery is going through chemo. She was smiley, happy, and completely relaxed.
Morning – Avery wakes up and is ready for her day. She has some play time and gives me some beautiful smiles. Avery is on continuous G-Tube feedings that run 24 hours a day.
Next up – Physical Therapy – This helps Avery regain mobility and get back her strength. Avery and her therapist, Miss LaToya, worked on side sit into transition, which will help with eventual crawling, bearing weight on her legs and standing. Avery wasn’t really thrilled about this part of therapy today because she’s had a rough few days of chemo already. She was, however, more than happy to ride her pink car.
Rounds were next – Avery has many doctors who specialize in her care. There are 9 oncologists in the practice. Each doctor is at the hospital for a full week at a time. Also, there is either a Nurse Practitioner or a Physician’s Assistant at the hospital and several residents training in their oncology rotation for several weeks. During their rounds, they check Avery’s trach area, her g-tube area, and her diaper area for any infection. They go over anything new with Dana and cover any questions she has. Avery wasn’t really happy to get off her pink car for her exam.
Avery was pretty upset after her exam. Momma, though, has the magic power of comforting her and calming her down. Avery immediately was completely content again after some love from her mom. She was right back to her smiley self. Again, reminding us how incredibly strong and loving this 2 year old baby girl is.
No seriously – She was ALL smiles.
Bath Time – Avery was on a very strict schedule for her chemo treatments. This particular round is especially brutal because it is more involved than any of the others. She was receiving 3 chemo drugs this round. All of them were much higher doses than normal and one of them – Thiotepa – is hardly ever given because it’s extremely harsh. Avery was getting a dose that was of one of the highest doses the unit had ever given. One of the drugs actually secretes through your skin so Avery will need a bath every 4 hours for 4 days straight. She’ll need trach care, G-tube care, new clothes, new bedding and Dana will have to change her clothes too. If these things aren’t done properly, Avery can get a chemical burn on her skin from the chemo drug. She also needed to have a diaper change every 2 hours and her vitals taken on the opposite 2 hours. This meant she had to be woken up in her sleep and she also had to be cleaned thoroughly to help rid any potential infections. To give you an idea, baths took around 30 to 45 minutes. This wasn’t an easy process for an adult; now imagine it for a child.
Prayers – Following all of this was exhausting and it was time to relax. One of the hospital’s chaplains, Mary Alice, stopped by to pray with Avery and Dana. It was beautiful and helped get Avery relaxed and ready to sleep.
Bath Time 2 – After a short nap, it was time for a diaper change and another bath. Remember, every 4 hours for a bath and every 2 hours for a diaper change. Given the time it takes to give the bath, it’s basically time for a diaper change following. It’s really a never-ending cycle.
Pet Therapy – Avery did have something to look forward to after her bath. A therapy dog named “Smudge” came to visit her. On the oncology unit, therapy dogs are used to help children relax and to comfort them during their battle. Unfortunately, Avery doesn’t get to see therapy dogs very often because you can’t be in isolation or have lab results pending. These are things are almost always going on with Avery so she often misses out on seeing the dogs. However, today Avery got to spend some time with a 2.5lb Chihuahua. He was very nervous and Avery wasn’t really sure what to think of him. At home, Avery has a 60lb Labrador named Mikko that she loves so to her dogs are usually pretty big! Smudge was extremely tiny. It was cute to watch her expression.
Chemo Preparation – After the visit from Smudge, it was time to start Avery’s chemo for the day. Unfortunately, her port was not responding properly and her nurse Victoria needed to re-access it so she could draw blood from it. Victoria tried a couple other ways to get it draw back but unfortunately they didn’t work and she ended up needing to be re-accessed. This isn’t terribly uncommon – it doesn’t mean something is wrong with the port, thankfully. It just means there’s a problem with the IV lines or the way the IV needle is put in there. It’s still not a fun process, especially when you’re already having a rough day!
Ronald McDonald House – After Avery’s port was accessed and she was calmed down, Dana laid Avery down to sleep. She needed to unpack at the Ronald McDonald house and she wanted me to see the place she has been calling home on and off for quite a few months. (This organization is truly incredible and I encourage everyone to look into donating when you are in line at McDonalds. Those donation boxes do go somewhere. You can also donate items to the house or volunteer there if you’d like! Go to www.rmhcdc.org for more information.) During this time, Dana opened up to me about what this experience has been like for her personally. She told me about her fears and explained how hard this has been on her family to spend such large amounts of time in the hospital split apart. Dana said something to me that was very profound. I told her I thought she was incredible and I don’t think I could have handled everything like she was. She responded, “You do what you have to for you family. I didn’t think I had a choice. She is my daughter and I will do whatever I need to for her. Avery is the brave one.”
Bath Time 3 & Family – Once we returned, Avery had already had her third bath of the day since I had been there. She was also on her second chemotherapy of the day. Dana’s mom and stepdad had arrived and Avery was very happy to see everyone. She was all smiles for pictures and was trying on new beaded trach necklaces.
Evening – The end of the day routine was to FaceTime with Avery’s dad, Mike, and her big sister, Ella. The four of them do this every night as a way to see each other when they’re apart. Mike works to support the family and Ella goes to daycare to stay in her routine. So their family life dynamic is this way during chemo treatments and all hospitalizations – Dana is with Avery at the hospital and Mike is with Ella at home. Mike and Ella come up to the hospital to visit one night during the week and every weekend. They’ll stay with Dane at the Ronald McDonald House. This was the time of day that Avery brightens up the most. She lit up every time Ella or Mike was on the phone. Dana told me that no matter how bad she feels, she’ll always get excited to FaceTime with her daddy and Ella. Her face made everyone around her smile. It was truly beautiful.
Those 12 hours changed me. I learned more about cancer that day than I had ever learned before. When I started this project I had a goal to educate and to bring awareness to the leading cause of death in children – pediatric cancer. I wanted to help my friend’s story reach people, inspire people and to encourage others to help. I want to do that now more than ever.
Avery Kathryn Heino passed away on April 7, 2015. She died, not from cancer but from the chemo drugs they use to fight cancer. Those drugs left her with many infections and caused multiple complications that caused her lungs to fail. She ended up on life support and it was unknown if she would ever get better. I know that more than anything I was in denial when I found out Avery had passed away. I was so angry and confused. I was truly lost and frustrated. My heart bleeds for Dana, Mike and Ella. Why? Why is this happening? Why is there no cure? Why is there little to no research on childhood cancer? Why aren’t there any answers? WHY?
Avery’s godmother, Maureen Linke, spoke at Avery’s Memorial Service. In her Word of Remembrance, she said, “Aside from watching Avery’s suffering the last ten months, one of the most difficult aspects has been enduring this feeling of helplessness and anger towards our nation’s failure to properly treat children with disease like AT/RT and other pediatric cancers. I will never utter the words “lost her battle with cancer” in relation to Avery. That puts the onus on her, as if, had she only fought a little harder, this may not have happened. The onus is not on her, but on us as a society for not giving her what she needed to win her fight. We don’t do enough for our children with cancer. Less than 4% of all federal funding is dedicated to researching cures for children’s cancer. That is absurd and something not one of us should stand for.”
I am asking you to think about your family and the children in your life. I am asking you to put yourself in the Heino family’s shoes. Help us make a change. Help us.
The Heino family has picked two charities that they would like us to support.
I know the first one. I am registered as a renegade now myself.
Stillbrave is local to the Northern Virginia area and the Executive Director/President Tom “Tattoo Tom” Mitchell has experienced the loss of his daughter Shayla from pediatric cancer. Please watch here to see Tom’s story and learn about the Stillbrave Organization.
- Dana Farber Cancer Institute: Please select from “Area of Greatest Need” drop down menu > “Neurological Cancers” > “Brain Tumor Fund – Pediatric”
Dana Farber Cancer Institute is a great organization. It specializes in research for the exact cancer that Avery had. They have treatment plans and specialize in care for this exact cancer. Click here for more information.
Lastly, if you feel compelled to do so, there is a fundraiser site for the Heino family. The donations raised will help the family with memorial expenses, medical expenses, etc. The fundraiser site can be found here.
Please feel free to share this photo series and pass it on to your friends. Let’s bring awareness! Let’s make a change!
I want to write a thank you to the Heino family for allowing me to be a part of this experience and for allowing me to take pictures of a very difficult time in their lives. Dana and Mike have shown me the type parent I hope to be one day. They have inspired so many alongside of Avery. I am truly grateful. Thank you.
I also want to thank INOVA Fairfax Children’s Hospital for allowing me to document Avery. All the doctors, nurses and staff were all willing to let me take pictures of the care they were giving. They all were truly incredible. You all treated Avery like she was your own and were always on top of her needs.
Finally, to Avery – I can’t thank you enough for the smiles, love and happiness you shared with me. I wish more than anything that society comes together for you. I promise to help and push as much as I can to bring awareness in honor of you. For #brAvery