Jacob's
Story
Jacob George Lieberman was born, along-side his fraternal twin brother, Joel Jr. (JJ) on July 22, 2015. Although the twins were born "premies", they both grew and flourished for the first 6 months of life. However, around the 7th month, we noticed Jake wasn't hitting his milestones. We took Jacob to several doctors and specialists to rule out any major complications or issues.
In May of 2016, we took Jake for a routine MRI, in order to rule out any neurological issues. The procedure turned out to be anything but routine. This day quickly turned into a day we will never forget.
After months of doctor visits, hospital stays, surgeries, seeing several specialists and completing genetic and muscle biopsy testing, Jake was diagnosed with a very rare genetic, degenerative neurometabolic disorder called Mitochrondiral Complex 1 Deficiency, otherwise known as Leigh’s Syndrome. This fatal disease wreaks havoc on brain, causing lesions to develop. This damage is found via MRI, which Jake 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 had a feeding tube and continued to struggle with eating, swallowing, talking, moving, crawling and walking. Jake had 5 appointments per week for Physical, Occupation and Feeding therapy. Although he showed the desire to play and crawl, he was never able to do so. Jake’s disease also causes low muscle tone (hypotonia) which impacted all areas of his physicality. After being diagnosed with his disease, Jacob lost his battle with Mitochondrial Disease on January 2, 2017. He was 17 months old.
While nothing can prepare you for the devastating news that your son is dying, that his life will never be “normal” and that he may not live to see his 2nd birthday, we still had hope. 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 touched the hearts and lives of all he came in contact with. Jake was a sweet, gentle and loving little boy whose memory will live on forever. Through Jacob's Joy, our hope is just that; to help his legacy live on by helping families that are currently going through a similar difficulty. We hope his story will give others the strength to overcome their sadness and fears when they too are starring at the face of opposition. We want to help families, in a financial capacity, when their children have been diagnosed with a rare and or terminal disease.
