Effective January 2021, direct financial relief from the funds raised by Steps Together will be available to families for a maximum duration of 24 months. We fully recognize that for most of those we help, the medical and financial impacts are much longer than this period of time, if not lifelong. For that reason, we remain committed to sharing their stories on our website, social media outlets and emails for as long as they need. They are always a part of our Steps Together family and our community of support. Direct support of the Savage family is encouraged through their personally established methods of giving.
WAYS TO HELP:
Above all, the Savage Family requests your prayers.
They can always use gift cards to food stores (ShopRite) to help pay for Conner’s keto diet, gas cards (for all his appointments) and Wal-Mart to fill in all the other needs. They can be forward to Steps Together, PO BOX 5773, Hillsborough, NJ 08844 c/o Savage Family.
CONNER’S STORY:
Conner suffered his first ever seizure on April 9, 2017. Up until that point, he was a perfectly healthy, thriving 3 and a half year old. Just two days prior, he attended his pre K orientation and was looking forward with excitement to start school in September. Unfortunately, Conner’s seizures are still uncontrolled, so he wasn’t able to start this year.
We frantically called 911 that morning and that was the first of many ambulance rides that followed. CJ was admitted, hooked up to an EEG and within minutes he had another seizure. He was released a week later with medication to take and we were told he has epilepsy.
Epilepsy? But we don’t even have epilepsy in our family? How does a perfectly healthy 3 and a half year old wake up one day with epilepsy? We still don’t understand.
CJ would be ok for a day or two then the seizures would return which meant back to the hospital. He was admitted 5 times that first month. Our little boy was becoming worse, resistant to medications, (we’ve tried so many we lost count)…and we were feeling helpless searching for answers. At one point, CJ was so sick that he was having hundreds of seizures a day.
His last admission into the hospital lasted 63 days. CJ had MRI’s, cat scans, xrays, a spinal tap and endless bloodwork done. He also went through two rounds of IV steroids which would have horrible side effects. He also had g tube surgery done because he couldn’t swallow all the medications and at one point, he wasn’t even eating. Through the surgery, they found that he has an inguinal hernia which will have to be dealt with at a later date. We’ve also started genetic testing to see if we can find a cause, but we haven’t been successful yet.
CJ suffers from many different types of seizures. The neurologist has diagnosed him with Doose Syndrome. It’s a rare type of epilepsy that is resistant to medications, meaning we can’t achieve full seizure control through medicine. He currently is on 3 different types of AED’s, plus 2 rescue meds which all cause horrible side effects. He loses his appetite, gets insomnia, bruises easily and is now starting to have behavioral problems. The seizures also affect CJ’s speech and walking. He has to wear a helmet at all times because we never know when one will strike. He will be starting therapy again soon, hoping it will help.
We also have tried cbd oil but unfortunately it didn’t help. CJ is also on the ketogenic diet. This diet has stopped two of his seizure types.
Our lives have changed dramatically since our peanut has become sick. I had to leave my job to care for him, which makes it extremely difficult to afford the basic necessities such as food and clothing, etc. CJ also has to have a nurse for overnight due to his seizures.
CJ also has a 14yr old brother, Jared, who loves and adores him very much.
Seeing your child sick and not being able to cure him is the absolute worst feeling in the world. The constant worry, the feelings of helplessness, they weigh on our minds and hearts every second of every day. I can say that the only positive that has come from all of this is that we all hug each other a little tighter, we don’t take life for granted and we never miss an opportunity to say I love you. My faith in God has strengthened and I pray for Conner’s healing every day.
JUNE 2019 UPDATE
It has been two years since Conner has been diagnosed with Myoclonic Astatic Epilepsy, also known as Doose Syndrome. Every day proves to be different and the feeling of helplessness lingers on.
CJ suffers from six different seizure types…atonic (drop) seizures, tonic clonic, myoclonic, absence, clonic and lastly tonic seizures.
Each day is different. He could wake up happy, wanting to play or wake up unable to speak clearly and unsteady on his feet. Cognitively, he’s at a 3yr old level. Despite all of the setbacks, Conner has a zest for life, he’s our little super hero, and we will continue to do everything we can to get our little boy back.
It would mean so much if you could say a prayer for Conner. Thank you.
JUNE 2020 UPDATE
These past 3 years have been difficult, to say the least. I don't think I'll ever understand how our perfectly healthy 3 1/2 year old just woke up one morning with this cruel syndrome. It has robbed him of so much.
Conner's atonic seizures have become worse this past year and with that brings on injuries. He loses full body control when they happen and its resulted in many black eyes this year along w sprains and fat lips from biting through them.
The other seizures are still causing issues w his walking and speech. He's in therapy but once the seizures strike, it's back to where we started.
Conner is on a combination of medicine but they all cause horrible side effects. Mainly the behavior issues are proving the most difficult to deal with. He started kindergarten in a special ed classroom and while he's cognitively not at the level he should be, he's slowly learning. He can recognize his name and due to his strained motor skills, we're working on getting him to be able to write his name.
Due to the increase in seizures, Conner needs constant supervision. Most days are exhausting, especially the mental aspect of it. The positive... it's taught me more patience, more understanding of special needs children and their parents, and its taught us all just how precious life is. Please say a Prayer for Conner. Thank you.
OCTOBER 2021 UPDATE
It has been a difficult year. If I had my way, no child would ever be sick. It's just so heartbreaking watching Conner struggle on a daily basis yet I'm so proud of the little fighter that he is.
Conner's seizures have not let up this past year. He has anywhere from 50 to 100 drop attack seizures a day. They leave him injured, frustrated and exhausted. He can't do what a typical 8yr old can. I long for the day when he can ride a bike or even just climb up and down stairs or kick a ball, but these seizures rob him of any normalcy. He's even having problems walking straight due to vertigo. His muscles are weak and his speech is affected as well. We've even ran out of new medication to try. Not sure of what we can try next, but I will never give up faith and I pray for him every day.
NOVEMBER 2022 UDPATE
There's no other way to say it...life with a medically fragile child is heartbreaking. To see your child sick is the worst feeling in the world. Instead of taking our son to baseball practice or his first soccer game we're taking him to the drs or for bloodwork or another test. It hurts to know that he can't even go to school without a nurse by his side.
Conner's seizures are still looming. Some days proving worse than others. There's no rhyme or reason... every day is different. He's covered in bruises and is sporting a black eye at the moment. Last night while giving him a bath, he started to seize. My heart sank. He flew under the water and banged his head pretty hard. I was able to grab him above water and thankfully the seizure didn't last too long. Even bath time is scary instead of fun.
Doose Syndrome is cruel. It is an uncommon childhood epilepsy. Please say a Prayer for Conner. If only I could give my life to save his.