Help Maci fight LGS via Corpus Callosotomy surgery

Maci’s epilepsy journey,

In December 2020 we noticed that Maci was making a brief movement with her hands. This movement became more frequent so we took her to her Dr. who then referred us to a neurologist.

At the initial apt the Neurologist didn’t say much but did recommend we do an in office EEG. This apt was scheduled a few weeks out, Maci didn’t make it that long, as these movements became way more frequent and bothersome. The Dr. told us to take Maci to the hospital and she was admitted for a 24hr EEG.

Right away the neurologist on call, Dr. Perry (our now neurologist)said that Maci’s brain waves are not normal and that she was having tonic seizures. We left this visit putting her on an anti seizure medicine and an emergency medicine to be with her at all times.

Things were ok until about March, when we were driving to get ice cream as a family and Maci had a Tonic-Clonic seizure that lasted about 5 min. Maci was rushed via the teddy bear express to Cook Children’s. Maci was admitted and monitored again with EEG and put on more medicines. This time they saw more seizures, she was having tonic, tonic clonic, and Myoclonic seizures.

At our follow up apt a month or so later Maci had a tonic-clonic seizure while visiting with Dr. Perry at Cook Children’s. After this we immediately took action and started to do anything and everything we could do to help so we put her on a strict keto diet. We were also trying several medicines to try and control seizures.

Soon after, during summer of 2021, Dr. Perry confirmed that Maci had Lennox-Gastaut Syndrome. Maci was then tested for developmental delays etc. and it was found she is at a 3-4 yr old level (she is 6).

Maci started kindergarten in fall of 2021, it was rough with being on different meds etc but seizures were not frequent and she was doing well.

In October, Maci started having more seizures, and they began to happen more often.

In November, clusters of seizures began right before Thanksgiving and no emergency medicine was stopping them. Maci was admitted to Cook Children’s November 25th, she reached Status Epilepticus several times and spent over a week in ICU along with several more days in the epilepsy unit.

Maci was finally good enough to go home on December 12th.  She was prescribed many new meds and she was able to make it about 2 weeks before she caught Covid and was very sick. Seizures were back and she was beside herself for about a week until she started to feel better and seizures slowed down again.

Maci took all of Christmas break to rest and then went back to school in January.

At the end January 2022 Maci was admitted to Cook Children’s again because seizures were uncontrollable.

While in the hospital, her team of neurologists said that they thought it was time to consider surgery for Maci.  Macis Dr’s believe that surgery is Maci’s best option to try and give her a good quality of life.

The surgery they have chosen is the Corpus Callosotomy. To put it in simple terms, they will be disconnecting the left and right sides of her brain so they can no longer communicate and seize at the same time.  There are so many risks with this surgery, but the thought of Maci having a day seizure free to play and do all the fun things a 6 year old should, really helps us make this decision. Maci will be in the hospital for 3-4 weeks after surgery.

 

If you know Maci, then you know she has a special spunk for life, she is always happy and cheering, and especially loves cheering others on! Maci loves to be active and has participated in several triathlons, her favorite series is the RipRoar triathlon series which she hopes to be able to compete in this summer! When she’s having a good day she even loves to practice with the kids on Bolt Tri Team. She’s such a special girl to all of us, especially her 3 siblings, and everyone that she meets!

 

Any money donated goes directly into an account to help cover medical expenses related to Maci and also help her family with additional expenses when she spends long amounts of time in the hospital.

 

Thank you from the bottom of our hearts.