Hello! My name is Jessica Lieberman, mother of two adorable fraternal twin boys, JJ (Joel Jr.) and Jacob. While JJ thrives as a “normal” 15 month old, Jake has not and on September 19th, 2016, after numerous hospital stays, seeing several specialists and completing genetic and muscle biopsy testing, he was diagnosed with a very rare genetic, degenerative neurometabolic disorder called Mitochrondiral Complex 1 Deficiency, otherwise known as Leigh’s Syndrome (there is currently no cure). This fatal disease wreaks havoc on the brain, causing lesions to develop. This damage is found via MRI, which Jake has had two. Both showed affected areas including the basal ganglia, which help control movement; the cerebellum, which controls the ability to balance and coordinates movement; and the brainstem, which connects the brain to the spinal cord and controls functions such as swallowing and breathing. Jake also suffers from a lack of energy, as the Mitochondria are the energy power-houses for the body and converting food into energy. Most children with this disease do not live past age 2 or 3. However, in some cases, children can live into their teen years.
Jake now has a feeding tube and continues to struggle with eating, swallowing, talking, moving, crawling and walking. Jake has 5 appointments per week for physical, occupational and speech/feeding therapy. Although he shows the desire to play and crawl, he is still not able to do so at this time. Jake’s disease also causes low muscle tone (hypotonia) which has impacted all areas of his physicality.
We are raising money to help pay for extensive medical bills and travel to special clinics, such as the one we will be visiting in Houston, TX; the UT Mitochrondrial Center of Excellence. We will most likely have to travel there many times and might possibly also travel to other hospitals around the country to find the best possible care for Jake.
We also want to help bring awareness to this disease and help fund money for research. Because this disease is so rare, little research has been done and there is little support present.
While nothing can prepare you for the devastating news that your son is dying, that his life will never be “normal” and that he will always struggle with the simplest tasks and bodily functions, like swallowing and breathing, we know that God has a plan for Jake. You see, God’s designs are perfect, even when they are “flawed”. There is no doubt that God knew what Jake would be up against and purposefully prepared him for the difficult journey ahead.
God created Jake with a loving spirit and adorable, infectious smile that melts hearts. Jake is a sweet, gentle and loving little boy who we desparately want to be healed. That is our prayer and we have faith that our mighty God can do just that, in His perfect timing. We are so encouraged by the love, support and prayers that have been poured over our family over the last year. We are confident that a lot of good will come out of this difficult journey and that God will be glorified, as He is faithful and has poured out His blessings on us, over and over again. We also hope that Jake's story will give others the strength to overcome their sadness and fears when they too are starring at the face of the most overwhelming opposition.
Thank you for time, love, prayers and support in helping Jacob’s Mito Fight.
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
"I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you." Genesis 28:15
"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28