PARTNER FAMILIES
Join us as a partner family - let's make a difference together!
For more information or to join please email us at info@curemito.org
FERENCZ FAMILY
Partner Family - Romania
Nora is 6 years old and the only child diagnosed with ECHS1 Deficiency in Eastern Europe. Ferencz family is hoping that a custom gene therapy will be developed in time to save Nora’s life, after the painful loss of her sister, Anna, age 1.
ECHS1 deficiency - Community for finding a cure - Gene therapy (cure-echs1.com)
JASMIN & STEPHAN PROKSCH
Partner Family - Austria
After their son, Ben was diagnosed with Leigh syndrome in November of 2019, Proksch family made it their mission to end Leigh syndrome. It is their greatest wish is to put an end to this disease and enable children to have a life.
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KISSINGER FAMILY
Partner Family - USA
Harold was born on February 24, 2017. He started showing delays at 6 months, had a mitochondrial crash at 11 months old and was diagnosed around 1 year. Harold can say hi and mom sometimes.Even though he faces many issues and struggles, he remains a happy boy!
ECHS1 deficiency - Community for finding a cure - Gene therapy (cure-echs1.com)
LLOYD FAMILY
Partner Family - Australia
When Lola was diagnosed in the January of 2017 with Surf1 deficiency, at 2.5years old, Lloyds' whole world changed. From that day they promised to fight to help find a treatment or cure for Lola and other children with Leigh syndrome. Lola is now 7 and although mito has taken some abilities from her, she never complains and is always smiling or laughing.
NIKOLAEV FAMILY
Partner Family - Bulgaria
Nikolaev family says: "Rali is now 4 years old, but she does not have much more time left with us. She keeps fighting Leigh syndrome eversince she was born and thanks to more than 15 bitter, sour and hot suppliments, she made it that far. But this is not a cure and the disease slowly takes her life."
EMERSON FAMILY
Partner Family - USA
Lina and Malachi both have SURF1 Leigh Syndrome. Emerson family is dedicated to finding a cure.
FEDORENKO FAMILY
Partner Family - Russia
"Family is what it is worth waking up for every day, breathing every second, enjoying every moment in life, despite any obstacles. I ask the universe to give Artemiy strength to survive the illness and in memory of our daughter Ksenia, I will fight and go forward to find treatment for children with Leigh Syndrome!."
BANASIAK FAMILY
Partner Family - Poland
"Kacper was diagnosed with surf1 deficiency in May 2018. Our whole life changed that day, but we knew we couldn't give up and we had to fight for medicine or therapy to save our son. Despite the illness that he has been through a lot, I do not give up, he is still a happy and smiling boy, and we strongly believe that our child and all children with Leigh Syndrome will receive their cure on time."
YANUKOVICH FAMILY
Partner Family - Belarus
"In our family, two children - Ksenia (5 years old) and Kirill (2 years old) are fighting a horrible diagnosis. My children are my heroes and my incentive not to give up, but continue in search of a cure!"
KRYSZTOFIUK FAMILY
Partner Family - Poland
The days when their sons were born are the most beautiful in Krysztofiuk's family's lives, but they have to fight for the health of their younger son. "Family love and support, divine help, determination and self-confidence make it possible to achieve something that you have never even dreamed of. We know that the day will come that our greatest dream will come true!"
Partner Family - Czech Republic
"Our family has four members. Mom Veronika, dad Miroslav and twins Eliška and Amálie. Amálie has a mitochondrial encephalopathy-SURF1 protein deficiency. Amálka is a huge warrior and every day she proves it with her beautiful smile. We try to help her on her journey as much as we can. We will never lose hope that we will find a cure and a way to save her life."
The Morris family is from Seattle, Washington. Colson lived with mitochondrial disease until he was four years old, and received excellent care at Seattle Children's Hospital. Yat: https://courageousparentsnetwork.org/blog/author/liz-morris
"We fight to cure them, to help others, we fight so that science does not abandon us, that medicine accompanies us saving the lives of our own, we fight to continue living and enjoying. We also fight for others, because we have suffered along the way and we know what these diagnoses hurt our souls."
Archie has ECHS1d, a Leigh-like syndrome, he was diagnosed at 13 months when he had a sudden onset of symptoms, during a viral illness. He is now quadriplegic, non-verbal and PEJ fed. He is a mostly happy little man, who attends school, Physio, OT and speech therapy.
RAGHAVENDRAN SRIKANTHAN
India
"I am from India and I have Mitochondrial disease called Leigh Syndrome,We are together in Cure Mito Foundation,adding new patients medical records with Leigh Syndrome to CoRS and Allstripes registry, creating awareness and developing new effective therapies to treat patients."
MAXIMO FAMILY
Partner Family - France
Gabriel is 10 years old and has Leigh Syndrome caused by MT-ND5 gene. Gabriel's family is dedicated to advancing reserach of his gene mutation for him and all other affected children.
CONNER FAMILY
Partner Family - USA
In 2016, Kendall started becoming unsteady in her balance and was diagnosed with Leigh Syndrome at 2.5 years old caused by a de novo mutation in her mitochondrial DNA at m. 3688 G>A. Kendall's mother Taylor Conner says, "It's a cruel, progressive disease, but Kendall is a very determined child which motivates us to find a cure.
JONES FAMILY
Partner Family - USA
"Just before her first birthday, Millie developed issues of failure to thrive and motor regressions. We then started the journey towards a diagnosis and received the devastating news of SURF1 Leigh Syndrome when she was only 18 months. Like all other families, we are looking for a cure to save our sweet daughter and show her all the world can offer."
PAREDES FAMILY
Partner Family - Ecuador
""Emmanuel is the best thing that has happened to us in our lives. We love everything about him, to the point that we love every little development or challenge that he overcomes in his health; and one could even say that we love even his illness for the simple fact of being part of it."
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MANCILLA FAMILY
Partner Family - Mexico
Leonardo's family says that the disease affects everything in the family - psychologically, economically and morally. They always live with FAITH but at the same time with fear because they don't know how many more years their child will live and if tomorrow he will not be there.
FOX FAMILY
Partner Family - UK
Harriet was diagnosed with Leigh Syndrome MT-ND6 in March 2021 not long after her 2nd Birthday. She’s always laughing and cuddling her big sister who is currently helping her learn the alphabet. Although Harriet now uses a wheelchair she is trying to get the strength back in her legs and not giving up.
KING FAMILY
Partner Family - USA
On May 19, 2022.. a day we will never forget, Cooper at 15.5mo was diagnosed with Leigh Syndrome (MT-ATP6 8993T>G). With the devastating news that our sweet baby boy may be taken from us far too soon, we set out to learn and teach everyone every single thing about Leigh Syndrome and Mitochondrial Diseases!!
JIMENEZ FAMILY
Partner Family - Colombia
Mateo started having seizures when he was 7 months old. He is currently 13 months old and was recently diagnosed with MT-ATP6 Leigh Syndrome.
We just started this fight, but as a family we will get ahead, he is our motivation.
SHAH FAMILY
Partner Family - India
Mourya was diagnosed with Leigh syndrome at 2.5 years old.
SUGAHARA FAMILY
Partner Family - Brazil
This is Yume, she has 30 years old. She has Leigh disease and she was diagnosed when she was 5 years old. Today, in addition to needing assistance 24 hours a day, dystonia is being the worst symptom.
PATANKAR FAMILY
Partner Family - Canada
"June 2023, right before his 3rd birthday Kiyaan is diagnosed with SURF1 Leigh Syndrome. What was even more difficult was to know that there is no cure. We, like all other parents, are no different in feeling all the emotions. We want to be part of this journey to help support these
kids in however small a way we can. "
Miner Gilsdorf Family
Partner Family - USA
“Our beloved Lucas was diagnosed with SURF1 Leigh Syndrome and Eosinophilic Esophagitis when he was a year old, after experiencing symptoms since he was 3 weeks old. His name means “bringer of light,” and during his two and ½ years, he lived up to this name in every way. We miss him constantly. We work with Cure Mito because we don’t want other children and families to experience the suffering and loss that is inevitable with a Leigh Syndrome diagnosis today.”
https://courageousparentsnetwork.org/blog/author/kimberly-gilsdorf/
McCormack Family
Partner Family - USA
After a long diagnostic odyssey, our beloved Milo was diagnosed with Spastic Ataxia Type 5, an AFG3L2-related Leigh-like syndrome in 2022 when he was 2.5 years old. We refuse to sit back and watch our child decline without trying to change the bleak narrative of mitochondrial diseases. Now we are on a mission to raise awareness and fund targeted research and drug development through our family foundation. Being part of the Cure Mito community gives us much needed support and hope to continue on this journey.
Suzor Family
Partner Family - USA
Lila is a cheerful and loving 10-year-old ECHS1 kiddo who enjoys life with an infectious smile! Even though her diagnosis has been a tough journey, she changes the worldview of nearly everyone she meets. To know Lila is to love her.
Urbina Family
Partner Family - USA
“Mia is a 7 years old. She is very courageous and a caring sister. She loves all animals and wants to be a veterinarian when she grows up. She was diagnosed with SURF1 Leigh Syndrome at age 4 after a genetic testing. Our biggest wish as a family is to bring awareness to Mitochondrial diseases and help pave the way to treatment and a cure.”
Help our kids today
Our Foundation’s effort to find a cure for Leigh syndrome and mitochondrial disease is accomplished by funding the efforts of doctors and researchers who share our passion and relentless drive to fight this devastating disease. 100% of your donations are tax deductible and will go directly to support research. The Cure Mito Foundation is a 501(c)(3) nonprofit organization. We thank you for your support!