Hello everyone,

Those who know us and James Lee probably already know his story and what this "fundraiser" is for (hence the title). For those who do not let me give a little back story into our lives and about our son, James.

Our son, James, was born perfectly happy and healthy in October of 2018.

2 weeks after James was born he was rushed to the ER and admitted to the care of the University of Michigan's Infectious disease team for HSV type 1 Meningitis. James at this point already suffered brain damage from bleeding and a swollen brain. He began having seizures shortly after our admission. He had a number of lumbar punctures, testing, scans, etc done. We had a lengthy stay but were out in time to take James home a little before Christmas.

When James was finally released from the hospital we were greeted with a sloo of new names and faces that would now be watching James and seeing him every couple of months (yes, still 'til this day even). From Neuro to the infectious disease and control team, PMR, eyes, and oncology. You name it he had a doctor for it basically. James had a series of EEGs performed after his release to monitor the damage from the seizures and bleeding and to ensure nothing more was happening. Unfortunately, they never came back well, and more often than we would have liked we ended up in the hospital for days being monitored. On December 14th, 2018 the Doctor actually diagnosed James with Cerebral Palsy.

From then on our lives have revolved strictly around hospital visits, stays, therapies, surgeries, and so forth. He has struggled with eating, severe pain, bathroom issues, and recognizing the other half of his body. Over the last 4 years, James has been (and still currently is) in OP, PT, Speech, and feeding therapy. He has been admitted and spent more than half of his life in a hospital room (yes, you guessed it 98% of the time with only one parent thanks to visitor restrictions), done botox, serial casting, daily medication, surgeries, testing, and so much more continuously to help him, relax him, give him comfort, and give him a sense of normalcy.

At the end of December 2021, his team and I decided to give botox one last shot with a higher dosage. By this point in time, we have exhausted all of our other options and James has shown no signs of improvement and has still continued to struggle with pain levels. A few days later our family caught covid-19 where James' health took a turn and again he was hospitalized. He was finally able to recover, but we wasted no time, and instead of going home to rest we packed our bags and attended an intensive PT/OT program in Pontiac, MI. My husband remained working back home, while I and both our boys remained at the program. James did AMAZING in this program.

Unfortunately, after our 3 weeks were up we were only able to go home for a day to recollect more bags and move into the Helen Devos Children's hospital from the beginning of February to the middle of April for an intensive feeding program. Luckily this time our whole family was able to be together. Although now we had to leave our hospital room every weekend (policy) and had no way to cook/store/make food (odd for a feeding program, no?). James and I both took off work on FMLA for the whole duration of this stay.

From December to April James had shown zero signs of change from his last round of botox. His last options were SDR surgery, tendon release surgery, and/or a pump inserted into his stomach to release his medication directly to where it needs to be 24/7. His stomach is yet too small for the pump, and he needs to be older for the tendon release surgery. Surgery is a big step and it took us some time to come around to it. But after listening to experiences of others similar to James and his pain and what not worsening putting it off any longer was just not in the cards.

We took a family trip down to Vanderbilt Children's Hospital in Nashville, TN where James was examined and evaluated by a number of specialists in the field to determine if he is a good candidate for SDR surgery. Over two whole days, James was touched, poked, stretched, and put to work to show exactly where he is at. It was determined that James was a triplegic CP candidate with 50% spasticity and 50% dystonia. Even though SDR surgery only takes care of the spasticity portion of James' issue if we can correct it a small amount he may be able to put that focus he had on his legs, walking, and standing into focusing on realizing he has a second arm and hand and wanting to put in the work to use it. Due to the surgery only taking care of a small portion of the issue it is believed he will still need the tendon release surgery later in life, but more than once compared to if he does not have the SDR surgery. He will still need some casting, in the beginning, to help return his foot to neutral, but we are hopeful of completely "X-ing" the baclofen pump! James will still need PT/OT regularly as he does now, but we are hoping it will not be as hard, and painful, and that we can focus on more than just his legs.

This surgery is a major move for not just James, but our whole family. It could change so much for him in his life. Over the past 4 years, we have not had to ask for help with travel, food, lodging, medical bills/equipment, or anything because of all of our amazing friends and families who have been so generous in helping us while we have been in and out of hospitals, and out on leave from work.

This has been a hard decision to come forth and ask from our family. But we are hoping and praying that this is the last time we need to be away from home and need to cover this kind of wild, last-moment expense. This GoFundMe is to help with paying our small portion of the surgery, traveling (drive & flight), lodging, food, and home medical equipment. This is not something we would ever ask had we been given some more time to save and prepare for. We knew it would be happening soon but were told a 6month plus wait due to our getting insurance approval.

We will drive down to Nashville, TN September 19th, 2022, and get a hotel during our stay in TN. On the 20th James will go in for pre-op and on Wednesday go in for surgery. Should all go as planned and well we will be discharged 2/3 days after surgery where dad will drive the car back, and James and Mom will fly back to MI where we will then be directly admitted to UofM for recovery and his PMR doctors therapy program for two weeks (yay, for more sleeping on a recliner).

During the first week, dad will be out of work to help in getting us to and from TN and to Motts. Week two and three he will return home to care for Liam, our second son. Mom will remain with James in the hospital during the duration of his stay.

We want to thank everyone who has been there and continues to be there for us every step of the way for Jamie, and Liam too. For everything, everyone has done to make sure our boys know they are cared for and loved. Our family is eternally grateful.

Warrier, James: