Help Edward improve home for disabled

On April 10, 2020, our world was completely turned upside down when we found our then 5-year-old son, Edward, slumped over his bed- not breathing, lips blue, and foaming at the mouth. We dialed 911 and he was rushed to the ER where we were told he had experienced his very first seizure, the first of many to come. Edward was hospitalized for the following four months, where he continued to have severe and recurrent seizures daily. Each day was a whirlwind full of meetings with doctors, hospital transfers and sleepless nights spent scouring the Internet for answers. He was finally placed in a medically induced coma for almost four weeks to give his little body a break, and soon after bringing him out of the coma, the doctors performed a tracheotomy to provide relief from all of the intubations that he endured.

After running tons of tests and finding no indications as to why Edward began having these seizures, he was diagnosed with F.I.R.E.S.. F.I.R.E.S. strikes previously healthy children and in most cases leaves the child with a developmental disability. Edward has gone from a happy, healthy child to one with a severe developmental disability. Although he is home now and is making very small baby steps in his progress, he is still incapable of doing most of the many things a healthy six-year-old can do. He is beginning to say some words and he is relearning how to walk with assistance, but it is necessary that he remain under a nurse’s care 18 hours a day.

Edward’s life, along with all of those around him, has been forever changed. We continue to cheer him on with each milestone he reaches and we are dedicated to providing him with the best care we can, however our home in its current form has its limitations. 

This fundraiser was started to help provide Edward with a safe place to be cared for. Because of our current homes size and layout, we are constantly concerned about the safety of Edward, our nurses, and ourselves.  The funds received would be put toward modifying dangerous areas of the home for Edward like hard corners, counter edges and bathroom improvment. We will also use the funds to cover the cost of building a ramp leading up to our house with hand rails. Edward had had some severs bumps and bruises from falling into corners as shown in some of his pictures.

Before this nightmare took place in April of 2020, Edward was a caring young boy who enjoyed riding his bike and playing soccer and golf. He enjoyed spending time with friends, family, and God. Each and every day we pray he will get back to that happy, healthy little boy that he once was, and we are grateful for the village of people both near and far that have been a part of Edward’s recovery thus far. Thank you in advance for taking interest in Edward’s story and for any contribution, whether it be monetary or in prayer, that you have to offer. God bless!