Nikolas is a happy, fun-loving, young boy with a life-long battle ahead of him. At age 3 we noticed that Nikolas was having some issues with his vision. After long hours and many doctors visits, it was discovered that Nikolas has a degenerative eye condition but no true diagnosis was known. Not knowing what the future would bring for Nikolas, as a family we made a decision to get Nikolas every tool necessary for him to have a chance of being independent throughout his life.
Nikolas has been learning Braille and has been receiving Orientation and Mobility training since age 4. We received support from early intervention and receive continuing support through the Beverly Public Schools, the amazing staffs at Ayers School and the Northeast Consortium.
In addition to Nikolas’s vision impairment he was diagnosed with Stage 4 Kidney disease at age 4. Through tons of testing and many trips to Boston Children’s Hospital, Nikolas has always maintained his huge smile so many have come to know and love.
Over the last 7 years of doctors appointments and many, many Genetic studies, until recently we still had no known reason or diagnosis for his vision or his kidney disease.
About a year ago this month Nikolas was declared Legally Blind and he was accepted by the Massachusetts Commission for the Blind. This has provided new avenues of support.
In the last 6 months some hope has come our way with a Genetic test discovering a genetic mutation. Nikolas is only 1 in 12 in the world known to have this. This gives us hope for the future that there may be something to help retain his current vision or even restore some of his vision. Technology is amazing. But for now, Nikolas continues to slowly slip into a world of darkness.
As for the kidney disease, Nikolas is now Late Stage 4 and will require a transplant at some point in the near future.
Nikolas takes multiple medications daily. He also receives a daily shot to assist in his growth which is slowed by his kidney disease. Every two weeks Nikolas also receives a painful injection to stimulate the growth of red blood cells as his kidneys no longer produce this hormone. Depriving him of energy and stamina. Through all of this, Nikolas is strong, brave and smiling. He gives us hope.
Our hope for this page is to spread the word to reach as many people as possible for when we need your help for Nikolas in the not so distant future.
Thank you for listening, because you ARE ‘A Hope for Nikolas.’
Please help by sharing Nikolas’s story.