￼￼Community Concert Fundraising Event for Liam
SVEYA will be hosting a Family Friendly Community Concert on Saturday, March 16th, 2019 from 3:00-8:00pm at the Spencer-Van Etten High School Auditorium to raise money for a local boy, Liam Hickey, and his Family. Liam has been diagnosed with a rare form of skeletal dysplasia and recently underwent major leg surgery. We will be hosting this Family Fun Filled Event focusing on celebrating the Superhero Spirit of little children fighting big battles. The Community Concert will highlight local bands performing a variety of music- featuring Michael and Keagan Toyryla, in the father and son rock band, Tijuana Danger Dogs. We are looking forward to throwing a fun, energetic and uplifting SUPERHERO themed community event!
FUN ACTIVITIES for all! Face painting, superhero photo booth, music, bakesale, raffle, Team Liam T shirts and Team Liam wristbands - all benefiting our one and only SUPER HERO LIAM!!!!
All funds raised from admission, concessions and raffles at the Community Concert will help provide financial assistance to Liam Hickey and his Family for his ongoing treatment, surgeries and recovery.
We thank you for your consideration in donating to our event and helping this One in a Million Super Hero, Liam!
With Gratitude, The Family of Liam Hickey & SVEYA Fundraising Committee
** THIS IS AN UPDATE TO LIAM'S JOURNEY:
Even Superheroes have setbacks....
Thursday February 14th, we had our follow-up visit with Liam’s orthopedic surgeon. Little Liam’s left leg has begun to heal and is looking good. His right leg hasn’t healed at all. The doctor explained how he wanted to compress Liam’s bones together on his right leg, we instantly thought that meant another surgery. However, we were amazed to hear that he was going to do it right then using the external hardware. So little Superman Liam sat and watched as the doctor cranked on his hardware and brought his bones closer together (a few millimeters). The room was filled with resident doctors and they were all looking at each other, looking at Liam, looking at Steve and I- like what are we missing?? Meanwhile the doctor keeps asking Liam ‘Are you okay?’, Liam just nodded and watched as his superhero legs got worked on. They then sent Liam out to get more X-rays to see if the adjustment in the hardware had moved his bones closer together. The resident doctor told me that what Liam just endured was excruciatingly painful and they couldn’t believe that he didn’t scream in pain. I’m telling you, this kid is AMAZING!! The doctor wants Liam to now stand and try to take a few steps, the weight, compression and movement will hopefully help that right leg start healing. He will see Liam back in 10 days. If there isn’t any sign of healing, Liam will have to have surgery again (possibility of a bone implant or additional breaking of the tibia), removal of the hardware and then have that leg casted. At minimum we are set back at least 8-10 weeks. It was hard news to hear but we will work hard at getting that leg to heal. Little Liam is ready to dig deep and learn to stand again!! We keep reminding him that he has superhero strength and he can do anything he sets his mind to! You have a lot of people backing you little boy!! #teamliam #oneinamillion #fighter#superherostrong
Liam had his surgery as planned on December 24th. It was a VERY emotional day for family, as our precious Liam bravely waved goodbye and went off with the surgeon. Liam's surgery took 3 hours. He had a double lower leg osteotomy with 8 pins in his legs. Liam is in a tremendous amount of pain as anyone can imagine.
We have a created a FB page TEAM LIAM - ONE IN A MILLION for those who want to follow Liam's story and journey as he faces a long and painful road of healing and rehabilitation. https://www.facebook.com/teamliamoneinamillion/
Here is a post by Liam's mom, Amanda Hickey on his daily struggles:
"I need to get real for a bit. I know seeing the photos and videos of Liam, seeing his smiling face and to hear we were sent home from the hospital so soon is encouraging, but the truth is our journey is just beginning. Liam has undergone a very major surgery and has months of healing and rehabilitation ahead of him. His external hardware is literally holding his legs together as he heals- as in the pins are drilled into/through the bones of his legs. Every movement is excruciatingly painful, it takes a minimum of two people to support his legs and move him from his wheelchair, commode, couch and bed. He can never switch positions as the hardware cannot be moved, or have pressure put on them- so he is stuck on his back or sitting. The pin care routine is such a hard process- it hurts him so bad and is so tedious and intimidating. Yes these are graphic photos- but it’s important for us to show everyone just how intense this procedure is and how amazing, brave and special Liam is. He was terrified of the hardware at first, but now he is proud of it!! He is the most incredible little boy and we could not be more proud of him. He is a literal Superhero- adorned with steel and titanium, but also a figurative Superhero- possessing true superhuman powers: strength, bravery and resilience."
Please keep Liam in your thoughts and prayers!
We are halfway to our goal! Thank you for all your support, he are so thankful to those who have helped our little superhero!
Please share and help us spread Liam's story and awareness of his extremely rare condition. xoxo
#teamliam #oneinamillion #superhero #myhero
WETM 18 News picked up Liam’s story with a follow up on his journey and surgery. Thank you Janay Parrott for the beautifully reported story and for your compassion to our amazing little SUPER HERO!
Liam's first major surgery is scheduled on December 24 2018.
Liam will be enduring a double lower leg osteotomy. He will be fitted with external fixation hardware for a minimum of three months to straighten his leg bones. After surgery, Liam will need to learn to walk again and head down a long, painful road to recovery.
We are still vigilantly trying to raise funds for his family, as there is SO VERY much to consider, to plan for, to worry about.
All funds raised by Liam's GoFundMe will be used specifically to help this precious child. The Hickey family is so very thankful for the outpouring of love and generosity that has been bestowed upon them in this very difficult time by family, friends and the community!
Again, thank you for showing compassion, empathy & concern for Liam! Your donations mean everything to this family - and every donation HELPS! Liam feels your L OVE!!
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
This is the story of LIAM MATTHEW BROCK HICKEY! He is a four year old little boy with an extremely rare genetic condition. The family has been keeping Liam’s story private and silently living with the fear of the unknown for the past 3 years. Liam has had countless specialists appointments, including those with a geneticist, orthopedist, endocrinologist, neurologist, cardiologist, pulmonologist, audiologist, ophthalmologist and otolaryngololist. He endures nearly constant trips to the Golisano Children's Hospital in Rochester, batteries of tests and exams. This little boy has had multiple MRI's, blood tests, X-rays, sleep studies, scans and examinations.
Through genetic testing, he has recently been diagnosed with an extremely rare form of skeletal dysplasia, Opsismodysplasia. This is a LIFE CHANGING DIAGNOSIS! His rare type is one of only two known cases in the United States!
Important to note, through all of this, along with the daily pain he is in, Liam remains a kind-hearted and brave warrior. His doctors love him! He has a special place in the hearts of his specialists. He is intelligent, witty and funny! He is a born entertainer and cracks jokes to cheer others up! Liam loves music, playing the mandolin with his grandfather, dinosaurs and of course MICKEY MOUSE!
The family has decided to share his story publicly at this time, as they are in desperate need of love and support from their extended network of family and friends, as well as the community! As anyone can imagine, this is extremely challenging time and beyond scary for his parents and all who love him. Encouragement, understanding and unconditional love in your darkest days can offer hope. The family feels to do so will help them remain positive, keep focused as well as educate others on his rare condition. Liam is facing a LONG road ahead of him with numerous surgeries in his future. His first major surgery is planned for the late fall, early winter and he will be immobile for 3 months. This surgery will involve both of Liam's legs.
The Team Liam GO FUND ME Campaign is being set up to meet the needs of this precious innocent little boy. All proceeds will be used for his care, the exorbitant cost of the many trips to Rochester and beyond; to meet the families needs as his parents will be out of work for months to care for him and to make any necessary changes to the home to make it easier & safer for him to navigate.
SO many wonderful people have already reached out to the family to offer help! The outpouring of love and support has been overwhelming and humbling. News team WETM 18 picked up Liam's story after he was granted a Make A Wish trip to Disney. His is a heartwarming story of a child's courage and strength, as well as a mother and father's love and determination and a hard fought battle to find answers and the needed help for her little boy! All who are blessed to know Liam couldn’t be more proud of this amazing child! He is truly a gift! He is truly "ONE IN A MILLION"!!!
Please help Liam by sharing his story and please also consider donating to this beautiful child!
Thank you to all who consider donating to LIAM'S JOURNEY <3
Due to the unforeseen delays in healing, his mom will be continuing her non-paid extended leave of absence from work! Liam requires 24/7 care
Please share his story and help this little superhero out if you are able, everything helps and TOGETHER we can make a difference in his recovery!
Team Liam thanks you!!!
Written by Liam’s mom, Amanda Hickey:
We have been trying to find answers regarding Liam’s condition for years. We have been seen by numerous specialists- literally more than I can recall. We have fought so hard to get his genetic testing done. It was a long battle just to begin the arduous process. Once we received the results the doctors were baffled- the findings were something they had never even heard of. Liam has a rare type of skeletal dysplasia- Opsismodysplasia. This condition is so rare there is only one other child in the U.S. that is living with this condition. There have only ever been 25 cases documented in the entire world!! Opsismodysplasia is a recessive inherited condition- he has to inherit a specific DNA defect from his mom and a specific DNA defect from his dad- all on one gene- INPPL1. The chances of this happening are so rare it’s almost impossible. The geneticist suggested myself and my husband, Steve, also have genetic testing done- to see if we could prove this. Sure enough I tested positive for a mutation on the gene INPPL1 and Steve tested positive for a mutation on the gene INPPL1. The chance of non-related parents both having the same genetic mutation is 1 in 10 million and the chance of Liam inheriting both genetic mutations (on the same genome) from us is 1 in 1 million. Liam is a true anomaly- but surely an amazing little boy who is literally defeating the odds!! Liam may be the first ever recorded high-functioning child with Opsismodysplasia!! He is our miracle! We are currently awaiting word from the International Skeletal Dysplasia Registry as to a final determination. They are reviewing his case, skeletal survey and genetic results. #teamliam #oneinamillion #literally #superhero
As the countdown to surgery begins I am trying to remain positive and remind myself this is all for a purpose. This surgery will result in my little boy having less pain and help his little leg bones get the strength and support they need. Today was a really rough day for me. Reality is setting in. I received a phone call from the head of PR at Golisano Children’s Hospital. She informed me that they would like to use Liam as the face of the children’s hospital. They want to highlight him and tell his story on their website. Yes his condition is beyond rare, and they want to educate others and shed light on his disease, but they want to showcase his perseverance and our family’s optimism as we face this trying time. She explained to me that she spoke with several doctors, all of whom, nominated Liam- he is something special. The way he smiles, cracks jokes, brightens up a room and captivates everyone around him- all while dealing with a debilitating and painful disease, one he cannot escape or be healed from. I’m reflecting on his zeal, happiness and love for life, focusing on the positive and holding on to the fact that he makes an impact on everyone he meets. He is for sure our one in a million boy!! #teamliam #oneinamillion
He was so brave and was still smiling. HE IS AMAZING!
We love you buddy!!! xoxo