We are so eternally, grateful for anyone who has taken the time to read Olivia’s story, share, and/ our donate to Olivia’s life changing fundraiser. It is truly so humbling to see how many people care so deeply to help our sweet little Olivias dreams come true.
We & Olivia’s siblings are so excited that this is now becoming a reality for her & her health. Some exciting updates are as follows-We have made much progress as this project moves along. As of now, the power portion is complete, which is super exciting, as well as some preparation in the yard regarding placement of her hydrotherapy unit. This is truly life-changing for our precious child & thank you to everyone who has helped make a difference in her life. Words can hardly properly express our sincere gratitude & thankfulness we feel so deeply in our hearts & will forever.
Thsnk you, thank you, thank you 🙏 May you & yours stay blessed & please know each of you have made a difference in her life forever. 🙏♾️💓🙏
Hi everyone, we wanted to share our story & humbly ask for help for our amazing & incredibly sweet 12 year old daughter Olivia Marie. Olivia was diagnosed in 2020 with a devastating & incredibly rare, progressive, Mitochondrial Disorder that affects every cell & function of her entire body and body system. Unfortunately, there is no cure and no treatment at this time other than keeping her body mobile, calming her neuropathies & spastic dysplasia she suffers from, as well as countless other side effects. We focus on conserving all energy to keep her body as mobile as possible for as long as possible. using various therapies as well as countless medications & supplements, restorative yoga, etc. We are blessed to have an incredible team of specialists at the Cleveland Clinic, however there is only so much medicine & supplements can do for her. Olivia’s health & body thrive in water, she swims at the pool, takes baths every single night with epsom salt, etc because the benefits of hydrotherapy are the only thing helping her body at this time. Olivia requires physical, occupational and aquatic therapies & so much more, however her doctors recommend we find services within the home & focus more on home-based therapies, including partial & modified school schedules to make her health & overall mobility her #1 priority, because she simply does not have the energy to make it to her rigorous appointment schedules &/ or school schedules most days without difficult.
Her Mitochondrial disease is progressing at this point, as she has recently has had seizures, worsening circulation issues, causing her feet, legs and hands turn purple blackish- this is a distal disease so when she starts losing more feeling in her hands and feet, it’s just going to start moving in and causing myopathies of her organ systems. Olivia wears ankle & leg orthotics day & night, uses elevators while at school, anywhere busy, & occasionally her wheelchair depending on the condition of her mobility each day. We have been working hard on trying to secure a Hydrotherapeutic Swim Spa to assist with so many of her health issues, since we are at a point of of being faced with so many challenges.
So, with that explanation, we are trying to figure out purchasing a home hydrotherapy unit which requires a proper pad for it to be placed on & a 220v line run accordingly. It could be crushed gravel I was told, or cement, but we are concerned financially & we were looking for someone reputable to help a bit if at all possible. We are struggling with one income, so we decided to make this a fun fundraiser for her with her siblings & family involved. Also, we were hoping someone can even point us in the right direction on how to proceed with installation. We really want this to be a surprise for her & she could really use the cheering up 🤗
Additionally, I am currently out of work caretaking for Olivia which has required much time, care & educating ourselves on what expectations are for Liv’s future. I unfortunately am also recovering from a recent hospitalization from meningitis, rebuilding my nervous system, post spinal complications, as well as other complete neurological rehab, so it’s a little tough to see how I can make this all work & didn’t know if anyone could be of help to us in this situation . 🙏
It is incredibly difficult for us to ask for help, but we feel like we have no other options at this point. We are incredibly proud, and more grateful than we we could adequately express. We truly just want & need to help improve Olivia’s quality of life and anything anyone can do to help on our family’s journey, we thank from the bottom of our hearts. Her siblings actually brought their Easter egg money & all their piggy banks to our room one night saying “we wanted to help buy Sissy’s Swim Spa because we just want her to feel better so she can play & have fun instead of all the other stuff she has to do to her body”
These strong & true words immediately & forever broke our hearts & will be etched in our memory forever for eternity. We are hopeful & feel blessed for each day we have with our sweet Olivia Marie.
Please know we completely understand & we sincerely appreciate your time & consideration of anything or any helpful information you can provide to us in this unforeseen situation. We find ourselves scared, anxious for her future , but incredibly hopeful that we can help her through this powerful & effective hydrotherapy As well as bring awareness to this difficult disease & all the families struggling with any illness, especially our precious & innocent children who are fighting any chronic illness. Blessings to all.
As parents, we thought she was healthy as all check ups were going great until this genetic mutation occurred at the Grade 1 level, which almost felt like overnight & a parents’ nightmare to hear the harshest words of-- “incurable, progressive with all organ symptoms, & simply management of symptoms,“ over long several years of testing, diagnosis & education on how to give her the life she deserves despite so many unforeseen challenges.
We sincerely thank you for your humbling & true generosity & any interest in helping our sweet little girl live her best life given her rare difficult diagnosis 🙏
With Love, hugs & so much appreciation,,
Olivia- Our little Mito Warrior 💚
“Team Tiny” - Olivia, Anthony & Angela, & her siblings Reese, Mia & Rocco 💓💚🙏