Love for Lincoln
Donation protected
Click here for Lincolns video!
Lincoln needs help to reach his walking and talking goal at Plasticity Brain Center in Orlando! The total experience is $8,000+. Insurance does not cover this. I will share live video feed from his week of therapies and show his progression live on Facebook in response to your generous donations! Every dollar counts! No donation is too small!❤️
Thank you SO much!!!!
Here is Lincolns Story...
If you don’t know Lincoln Harris or his story, I will try and sum it up as much as possible without being too lengthy. (Just kidding its pretty lengthy...lol). For the more detailed story of his life, you can check out his page at www.facebook.com/love4linky
Lincoln was born a September 3rd, 2015 at home in Palm Coast, Florida. He was a healthy and beautiful baby with absolutely no issues or noticeable conditions that his midwives or pediatrician could physically see or anything that came back on examination/routine blood tests. He was perfect! His tests were perfect.
It wasn’t until he was about 4 months old that I really thought something was wrong....well I always had a weird feeling something wasn’t quite right about Lincoln but my concerns grew stronger with each missed milestone. (mom gut!) He was noticeably delayed starting at around 2 months old and seemed as though by 4 months he actually regressed. His neck strength deteriorated and he plateaued and started missing milestones. Everyone I brought up my concerns with felt I was worrying too much and that ”All kids develop at their own pace". He also had a larger head than normal, had very large soft spots down his temples and to the bridge of his nose, and even at 6 months couldn’t even sit in a high chair without falling with all his weight of his head to the side. He couldn't reach and grip anything, we couldn’t start solids until 8-9 months old because he would choke on everything including purées and he didn’t sit WITH assistance until around 10 months. Although he was severely delayed, he was SUCH ham and was growing and happy otherwise.
At 11 months old Lincoln woke up one morning with his very first fever. I hadn’t even had a chance to take his temperature yet but I knew he had one. I nursed him and laid him down on the floor as I usually did every morning for his ‘’morning nap’’. About a minute later after I walked away I heard him making a strange repetitive sound and when i walked back in to see what he was doing, he was on his back convulsing. I had no idea he was actually having a seizure because I didn’t know they looked like that. I thought he was literally dying. I called 9-1-1 and EMT was at my door about 7 minutes later and took over. I was HYSTERICAL! I thought I was seriously watching my baby die that morning. About 13 minutes into the seizure they got him to stop and we were rushed by ambulance to Florida Hospital of Flagler. When we arrived he slowly started coming to as we waited for the doctor. They said he had an ear infection and that he just had a benign childhood febrile seizure and he won’t have another one. We were given antibiotics for the ear infection and sent home without instruction on if it happened again or anything, because apparently from what that doctor said, they only happen once and she was POSITIVE it would be his only one.
After Lincoln’s nap that same day, while he was on Tylenol AND Motrin for the ear infection and fever, he slipped into another seizure right in my arms. I called 9-1-1 frantic and crying again. EMT arrived and after about 20 minutes, on the way back to the hospital, he stopped with emergency medication. This time I followed behind the ambulence and when I arrived they were just about to let me back into the room when he fell back into a THIRD seizure! They called Wolfsons Children’s Hospital in Jacksonville to come with their ICU bus to transport him to the PICU since everything they were doing wasn’t in working. We watched our baby seizing uncontrollably as a nurse held him down, with a ventilator down his throat and cords and tubes all over. All I remember is non-stop crying and hyperventilating, singing ‘’You are my Sunshine” in his ear and holding his hand thinking this was the last time I might see him alive. They couldn’t give us any answers or even an answer as to if he might have brain damage if he pulled through. He seized straight through all rescue medications for 45 minutes.
Once at Wolfsons they began running CT scans, spinal taps, EEG, MRI, blood tests, genetic tests, urine tests, ultra sounds and found he had an ear infection, another viral infection they could never figure out along with brain abnormalities that he was born with. When he started making progress and the infection ran the brute of its course, he was discharged 3 days later with absent septum pellucidum, dilated lateral ventricles, delayed mylanation, abnormal white matter, global delay, hypotonia, referrals for speech therapy, OT, PT, and a hand out on what to do if he seizes again. They had no clear idea on what caused this, why or what his prognosis was or if he was going to seize again because they couldn’t determine if it was still a complex febrile seizure OR epilepsy.
Throughout 2016 he had 2 additional complex febrile seizures with illnesses. 1 was 20 minutes which he pulled out of by himself with EMT there, and he had a MASSIVE 7 hour seizure January 2017 from an ear infection and RSV where again he stayed in the ICU at Wolfons to recover. He went into respiratory failure and sepsis but pulled out of it and was discharged on a year of Keppra.
He weaned off Keppra in March of 2018. Lincoln could
not retain language being on Keppra and had severe short term memory loss for a year which set him back even more. Once he was weaned off he started added words to his vocabulary THAT WEEK!
We met with his neurologist team at Children’s Hospital of Philadelphia in July of 2018 where they ran their own tests. Just when he was about to be 2 years seizure free, Lincoln had another seizure with the flu in December of 2018 a few days before Christmas. When I picked him up off the couch he stopped seizing about a minute later, so there was no need to call an ambulance and go to the ER this time.
After meeting with his team at a CHOP this past January, the neurogenetics team and his neurology team at Nemours they officially diagnosed Lincoln with Septo Optic Dysplasia being that this was the most “probable” diagnosis.
https://rarediseases.info.nih.gov/diseases/7627/septo-optic-dysplasia-spectrum
Since he is so unique with his symptoms and basically on the “spectrum” they are running a exome genetic test on him to be sure it’s not anything else which we will get answers hopefully in April but still even with the SOD diagnosis they have no prognosis, have no idea if he’s ever going to walk or why he’s seizing.
Being 3 years old, we are SO happy to see that he hasn’t had a a MASSIVE uncontrollable seizure landing him an ICU stay like we have seen in the past, but at the same time we have not had real answers to his complications and brain abnormalities with the specialists he has seen. There have been many inborn errors or genetic conditions ruled out based on his specific findings so at this point, a cure is very far out of reach. It’s a wait and see game for this medical mystery even if he positivity has SOD.
Right now all we can do is strengthen his therapies to see if we can get his brain functioning better. He’s a totally normal 3.5 year old stuck in a 2 year old body is how i can describe him. He is a bit unbalanced so he can’t stand on his own and he is just barely saying a few words. He’s using his walker pretty well and goes to Bunnell Elementrys Early Learning Center for the ESE program and their therapies. He’s also getting Therapies through Speech Works the insurance is thankfully covering. He crawls and pulls up on furniture, has a silly lovable personality, loves to laugh and wrestle with his brother, likes riding in things and going fast (daredevil at heart) and is just learning how to use a spoon and fork.
—————————————
With this all being said, we need to find a way to really get down to the nitty gritty with therapies since we are SEEING progression very little bits at a time and then plateauing for many months too. I have researched neuroplasticity and feel Lincoln would really do amazing at a specialty center based on intensive therapies to change the way his brain is working and really zeroing in on exactly what is getting in the way of his speech and motor skills. If we can mold his brain to process things differently then we can help his brain to send information to his body much faster and better and change his life forever.
For more information about neuroplasticity watch this video: https://youtu.be/kWIagHUqD8A
There is a place called Plasticity Brain Center in Orlando where they have ground breaking therapies for children like Lincoln. There are doctors from all over the world and people come from all over the world to get therapies here. They would evaluate Lincoln and set a plan for him to walk and talk. This clinic is for patients who have already gone through everything they can for their brain issues and have nothing left or have hit a plateau in improvement.
Check out out what they do here: http://www.plasticitybraincenters.com/what-to-expect
The entire trip and the whole experience will be $8,000+ with the treatment being $7,500 alone. I know that sounds like a lot and that’s exactly why I’m doing this GoFundMe. I don’t like asking for money but this issue is really dear to me because Lincoln is my world just as Jacob is. I just want him to be what I know he can be on the inside. I want to see him running around and I want him to be able to tell me what he needs without getting frustrated or tell me if he’s sick or hurt. His crawling is painful to see when he’s outside and his balance is still weak as he falls and hits his head a lot. This experience will be dramatic for our family!
Thank you for reading all of that if you got through it all. Lol :)
I also want to thank The Colby Fund for taking care of us with hotel stay while we were in Philly for his January visit. That has helped SO much!
Lincoln needs help to reach his walking and talking goal at Plasticity Brain Center in Orlando! The total experience is $8,000+. Insurance does not cover this. I will share live video feed from his week of therapies and show his progression live on Facebook in response to your generous donations! Every dollar counts! No donation is too small!❤️
Thank you SO much!!!!
Here is Lincolns Story...
If you don’t know Lincoln Harris or his story, I will try and sum it up as much as possible without being too lengthy. (Just kidding its pretty lengthy...lol). For the more detailed story of his life, you can check out his page at www.facebook.com/love4linky
Lincoln was born a September 3rd, 2015 at home in Palm Coast, Florida. He was a healthy and beautiful baby with absolutely no issues or noticeable conditions that his midwives or pediatrician could physically see or anything that came back on examination/routine blood tests. He was perfect! His tests were perfect.
It wasn’t until he was about 4 months old that I really thought something was wrong....well I always had a weird feeling something wasn’t quite right about Lincoln but my concerns grew stronger with each missed milestone. (mom gut!) He was noticeably delayed starting at around 2 months old and seemed as though by 4 months he actually regressed. His neck strength deteriorated and he plateaued and started missing milestones. Everyone I brought up my concerns with felt I was worrying too much and that ”All kids develop at their own pace". He also had a larger head than normal, had very large soft spots down his temples and to the bridge of his nose, and even at 6 months couldn’t even sit in a high chair without falling with all his weight of his head to the side. He couldn't reach and grip anything, we couldn’t start solids until 8-9 months old because he would choke on everything including purées and he didn’t sit WITH assistance until around 10 months. Although he was severely delayed, he was SUCH ham and was growing and happy otherwise.
At 11 months old Lincoln woke up one morning with his very first fever. I hadn’t even had a chance to take his temperature yet but I knew he had one. I nursed him and laid him down on the floor as I usually did every morning for his ‘’morning nap’’. About a minute later after I walked away I heard him making a strange repetitive sound and when i walked back in to see what he was doing, he was on his back convulsing. I had no idea he was actually having a seizure because I didn’t know they looked like that. I thought he was literally dying. I called 9-1-1 and EMT was at my door about 7 minutes later and took over. I was HYSTERICAL! I thought I was seriously watching my baby die that morning. About 13 minutes into the seizure they got him to stop and we were rushed by ambulance to Florida Hospital of Flagler. When we arrived he slowly started coming to as we waited for the doctor. They said he had an ear infection and that he just had a benign childhood febrile seizure and he won’t have another one. We were given antibiotics for the ear infection and sent home without instruction on if it happened again or anything, because apparently from what that doctor said, they only happen once and she was POSITIVE it would be his only one.
After Lincoln’s nap that same day, while he was on Tylenol AND Motrin for the ear infection and fever, he slipped into another seizure right in my arms. I called 9-1-1 frantic and crying again. EMT arrived and after about 20 minutes, on the way back to the hospital, he stopped with emergency medication. This time I followed behind the ambulence and when I arrived they were just about to let me back into the room when he fell back into a THIRD seizure! They called Wolfsons Children’s Hospital in Jacksonville to come with their ICU bus to transport him to the PICU since everything they were doing wasn’t in working. We watched our baby seizing uncontrollably as a nurse held him down, with a ventilator down his throat and cords and tubes all over. All I remember is non-stop crying and hyperventilating, singing ‘’You are my Sunshine” in his ear and holding his hand thinking this was the last time I might see him alive. They couldn’t give us any answers or even an answer as to if he might have brain damage if he pulled through. He seized straight through all rescue medications for 45 minutes.
Once at Wolfsons they began running CT scans, spinal taps, EEG, MRI, blood tests, genetic tests, urine tests, ultra sounds and found he had an ear infection, another viral infection they could never figure out along with brain abnormalities that he was born with. When he started making progress and the infection ran the brute of its course, he was discharged 3 days later with absent septum pellucidum, dilated lateral ventricles, delayed mylanation, abnormal white matter, global delay, hypotonia, referrals for speech therapy, OT, PT, and a hand out on what to do if he seizes again. They had no clear idea on what caused this, why or what his prognosis was or if he was going to seize again because they couldn’t determine if it was still a complex febrile seizure OR epilepsy.
Throughout 2016 he had 2 additional complex febrile seizures with illnesses. 1 was 20 minutes which he pulled out of by himself with EMT there, and he had a MASSIVE 7 hour seizure January 2017 from an ear infection and RSV where again he stayed in the ICU at Wolfons to recover. He went into respiratory failure and sepsis but pulled out of it and was discharged on a year of Keppra.
He weaned off Keppra in March of 2018. Lincoln could
not retain language being on Keppra and had severe short term memory loss for a year which set him back even more. Once he was weaned off he started added words to his vocabulary THAT WEEK!
We met with his neurologist team at Children’s Hospital of Philadelphia in July of 2018 where they ran their own tests. Just when he was about to be 2 years seizure free, Lincoln had another seizure with the flu in December of 2018 a few days before Christmas. When I picked him up off the couch he stopped seizing about a minute later, so there was no need to call an ambulance and go to the ER this time.
After meeting with his team at a CHOP this past January, the neurogenetics team and his neurology team at Nemours they officially diagnosed Lincoln with Septo Optic Dysplasia being that this was the most “probable” diagnosis.
https://rarediseases.info.nih.gov/diseases/7627/septo-optic-dysplasia-spectrum
Since he is so unique with his symptoms and basically on the “spectrum” they are running a exome genetic test on him to be sure it’s not anything else which we will get answers hopefully in April but still even with the SOD diagnosis they have no prognosis, have no idea if he’s ever going to walk or why he’s seizing.
Being 3 years old, we are SO happy to see that he hasn’t had a a MASSIVE uncontrollable seizure landing him an ICU stay like we have seen in the past, but at the same time we have not had real answers to his complications and brain abnormalities with the specialists he has seen. There have been many inborn errors or genetic conditions ruled out based on his specific findings so at this point, a cure is very far out of reach. It’s a wait and see game for this medical mystery even if he positivity has SOD.
Right now all we can do is strengthen his therapies to see if we can get his brain functioning better. He’s a totally normal 3.5 year old stuck in a 2 year old body is how i can describe him. He is a bit unbalanced so he can’t stand on his own and he is just barely saying a few words. He’s using his walker pretty well and goes to Bunnell Elementrys Early Learning Center for the ESE program and their therapies. He’s also getting Therapies through Speech Works the insurance is thankfully covering. He crawls and pulls up on furniture, has a silly lovable personality, loves to laugh and wrestle with his brother, likes riding in things and going fast (daredevil at heart) and is just learning how to use a spoon and fork.
—————————————
With this all being said, we need to find a way to really get down to the nitty gritty with therapies since we are SEEING progression very little bits at a time and then plateauing for many months too. I have researched neuroplasticity and feel Lincoln would really do amazing at a specialty center based on intensive therapies to change the way his brain is working and really zeroing in on exactly what is getting in the way of his speech and motor skills. If we can mold his brain to process things differently then we can help his brain to send information to his body much faster and better and change his life forever.
For more information about neuroplasticity watch this video: https://youtu.be/kWIagHUqD8A
There is a place called Plasticity Brain Center in Orlando where they have ground breaking therapies for children like Lincoln. There are doctors from all over the world and people come from all over the world to get therapies here. They would evaluate Lincoln and set a plan for him to walk and talk. This clinic is for patients who have already gone through everything they can for their brain issues and have nothing left or have hit a plateau in improvement.
Check out out what they do here: http://www.plasticitybraincenters.com/what-to-expect
The entire trip and the whole experience will be $8,000+ with the treatment being $7,500 alone. I know that sounds like a lot and that’s exactly why I’m doing this GoFundMe. I don’t like asking for money but this issue is really dear to me because Lincoln is my world just as Jacob is. I just want him to be what I know he can be on the inside. I want to see him running around and I want him to be able to tell me what he needs without getting frustrated or tell me if he’s sick or hurt. His crawling is painful to see when he’s outside and his balance is still weak as he falls and hits his head a lot. This experience will be dramatic for our family!
Thank you for reading all of that if you got through it all. Lol :)
I also want to thank The Colby Fund for taking care of us with hotel stay while we were in Philly for his January visit. That has helped SO much!
Organizer
Stacy Harris
Organizer
Palm Coast, FL
