Raising Up Miracles

We are raising money for our two youngest children, Solomon Micah  and Simeon Isaiah  Jackson .
 

In 2017, our world was rocked when our middle son Solomon, started limping around at the age of 18 months. It was only 4 months later when we sat in a neurologist office and he was diagnosed with a rare brain disease called CLN1 (Cernoid Lipofuscinosus Neuronal Stage 1). This disease is terminal for most kids diagnosed before the age of 27 months. Over the past  year and a half, he has lost the ability to walk, talk, feed himself and so much more. To watch your child suffer and you cannot do anything to  take the pain away is heartbreaking. CLN1 has caused him to almost lose all control of his body as well as induced seizures.

       In 2018, our youngest son, Simeon, started showing the same symptoms and is now given the same diagnosis.  We have tried to remain hopeful in this situation, but I would be lying if I said it is easy. The task of caring for two children with terminal illness is almost like drowning because most days we feel like we can't breathe. 
  
 However, we have come across some groundbreaking information that would help both of our children. 

             So we are raising money in order to get our children medications and treatments  that the insurance will not cover at all or only partial coverage. The treatments can cost over 60,000 per patient. My husband and I are both school teachers.  In addition, I have lost significant income due to the amount of family sick days I have taken for doctor appointments and hospital stays in order to care for both children. We can't afford these items by ourselves so we are asking for help to get our kids to Boston Children's Hospital where doctors who are treating this rare disease and have helped children like ours recover.
 
        The condition also causes many other health problems which lead us to have a specialty appointment every week plus we are required to purchase a lot of medical equipment. Specialist like genetic counselors  and gene therapists are not covered by the insurance company requiring us to pay out of pocket. 

      The money will also help with medical bills, medical equipment (leg braces, back brace, custom shoes for leg braces, gait trainer, neck brace and etc), nutritional supplements, medical procedures (updated MRI , Cat Scan, EEG and etc) expenses, and travel expenses so we can get to Boston from the DFW area for the next 3-6 months. The amount is significant because both children need their own customized plan  since the disease is manifesting with different symptoms in some areas.  Furthermore, we are trying to get our kids into the neurology program in Boston by late June or early July, after regular school ends. Whatever you can do to help us we will greatly appreciated because we are "Raising Up Miracles". 

      This situation is urgent as most kids do not make it pass the age of 4 years old.  But, we will remain hopeful as we wait for our miracle.

    Updates and photos will be given continuously as donations come in so that you see where you money is going. The pictures attached are them currently, Solomon in his wheelchair and Simeon during his recent hospital stay.