Benjamin

Hello,

I am creating a GoFundMe for anyone interested in helping my son Benjamin (aka the Bensters, Benny, Ben). I was fired from my job in 2019 when I told my employer about my son’s diagnosis, but I found that I am still unable to work due to Ben’s ever-growing medical and developmental needs.

Benjamin is the sweetest kid. He has come SO VERY far since birth but still faces many challenges.

He was born with CHARGE syndrome and Dandy-Walker Syndrome. I just found out earlier this year that he does not have Kleefstra Syndrome, although I am still puzzled as to why I was told that he did by multiple providers. He is considered deaf/blind and requires a great deal of medical care, all of which I personally provide around the clock. I could have 5 healthy newborns and it wouldn’t compare to the needs of 1 Benny.

Ben can’t walk, talk, eat, or hear. He has a lot of vision, heart, and kidney problems. He was born with a collapsed trachea, detached esophagus, bilateral blocked nasal passages, and clots in his brain. He coded often at the hospital; I am lucky he is alive. He is at risk of choking from having a disorganized swallow and also when vomiting (and he vomits a lot due to the detached esophagus in which he was born) and has a lot of breathing issues even when healthy. I have had to perform CPR on him twice. He has constantly been sick since birth. There are too many sicknesses to list, but we are currently dealing with severe and recurrent respiratory infections. He has been diagnosed with an immune deficiency because he doesn’t build antibodies. We’ve lived in isolation since birth trying to keep him safe.

I am concerned in so many ways for him developmentally. He doesn’t wave hello/or goodbye and most of the time doesn’t know you are communicating with him. I am at a loss.

We’ve been in isolation and haven’t had any help since having him 3 + years ago due to his underlying anatomy coupled with his immune system deficiency. Not even one day/night of detachment. His oxygen dips often when he’s sick. It’s a battle keeping him out of the hospital administering breathing treatments and medications and constantly adjusting his supplemental oxygen around the clock.

It has been a rollercoaster since birth. I watched Ben code over and over in the NICU for 5 months. I have been told the extremes of nothing was wrong with my child to there being no hope for him. I have watched others give ugly stares without offering a word of compassion as he was carried to the ambulance multiple times. Others have given strange looks as I have tube-fed my kid while others rolled their eyes while he has made loud noises or acted differently. On the other hand, I have also experienced some of the kindest moments in my life with the most compassionate people who have offered food and given support by dropping off thoughtful gifts on our doorstep. I have been offered words of encouragement from those who have never even met Ben. Others have prayed for us. Those people help get me through and I will be eternally grateful.

If you are able to help, these are just a few of the many things contributions will go towards:

• Additional therapies to get Ben moving forward (speech therapy for communication and eating, physical therapy for mobility, and occupational therapy for fine motor). He does get some therapy already, but additional therapies are needed and I would love to get him into hippotherapy but can’t afford it due to the additional therapy and stable fees.

• School and learning resources that range from online classes to special needs supplies.

• Interactive materials that can engage his learning while also distracting him enough to tolerate hearing aids, patching of eyes, and wearing glasses. I’ve been trying to get him to tolerate these aids for over 2.5 years. I am still trying, but due to being in survival mode due to recurrent illness, any chance of hearing environmental sounds is most likely lost due to what he has of the nerves dying off from nonstimulation. We now run that same risk with vision.

• Transportation needs for his disability that would assist me in being able to get him in and out of the car. He doesn’t hold onto things, so he is unable to pull himself up into the car and lift himself down or walk to and from the car without my assistance.

• Prescriptions that he needs that aren’t covered by insurance.

• Medical bills and equipment/supplies that insurance won’t cover.

• Respite care from someone who will at a minimum follow safety protocols, but also be able to provide medical care and hopefully engage with him.

It’s been hard. I thought I had been through a lot in my life, including much abuse and loss early in life -- but compared to Ben, I really haven’t been through that much. He’s been through more in 3 years than most people would endure in 3 lifetimes. But, he is so strong and resilient!!

He just needs help moving forward. I have already exhausted any savings or free resources available to him; please help if you can.

Thank you,

Kris and Benny