Lex Butler is a 14 year old boy with a heart of gold. He lights up the room with his smile. His constant hugs mean the world to us! Besides Legos, he loves playing board games with anyone who will play with him. His new favorite is Battleship.  He is an avid animal lover and adores the show Wild Kratts. He started an art journal to have his own collection of animals. 

Lex's Journey and Early Years-
Lex began having seizures around 6 months old. At first, they were small head drops and eye flutters but he had hundreds daily! A few months later, he was diagnosed with generalized epilepsy after extensive testing at Boston's Children's Hospital, in MA. There was some excitement when after having a full genetics workup done, it was discovered that Lex had a -unique to him- chromosome 15q duplication. This was explained to us that it was extremely rare, less than 5 people in the world were known to have this chromosome abnormality AND they were confident that this was the source of his epilepsy. Unfortunately, this was not the case, at least not the part about the cause of his epilepsy.  His epilepsy is genetic yet not inherited and it is also idiopathic meaning they just do not know the cause.

Lex's Current Story-
Lex continued having these petite mal or absence seizures even after he was put on daily medication until he developed more severe seizure types including tonic clonic seizures about five years ago. He has good days with no to few clinical seizures which are seizures that we see even though his EEGs show constant activity. He has bad days with large seizures and/or absence seizures. Then he has really bad days that require emergency intervention whether that be our emergency medications at home or a trip to the ER in an ambulance usually.  We now have three emergency medications at home to halt seizures that go on too long which is anything past 5 minutes. We also have a pulse oximeter to check his heart rate and blood oxygen level. This is critical and so far we have been able to stop the seizures and monitor at home. His injuries from falls are likely to be the reason for our next ER visit.  We last went to the ER in the summer of 2019 when he fell and knocked his front teeth out 7 times- yes 7 times in one summer! The last one he swallowed and we had to confirm by xray that he didn't aspirate the tooth. He didn't. Praise God!

He is currently on four meds now but has failed an additional four others including the ketogenic diet which we hoped and prayed was his miracle as it is for many children like Lex. We gave it a strong chance keeping faithful to the diet for two years then weaning to a less strict diet called the Modified Atkins diet. These meds have not controlled his epilepsy and he is now diagnosed as intractable or refractory which simply means uncontrolled by medication.
Lex was also diagnosed early on with global developmental delay. He was behind on just about every marker for development. He was extremely delayed in speech and did not speak until he was three years old after two years of speech therapy. Also his growth has fallen off the charts somewhere in the negative 5 range. We started growth hormone therapy a few years back but the daily shots in addition to his daily meds and seizures proved to be too much for him.


Additional Diagnosis Setbacks-
Lex was diagnosed as well with significant intellectual disability and functions at about a 6-9 year old range depending on the task. Although he is full of love and great joy, he is not able to live like a normal 14 year old boy. He needs round the clock supervision. This is hard on all involved and difficult for a preteen and now teenager.  Although he is mobile and verbal and we have taught him many basic self care tasks, he must be supervised at all times including standing outside the bathroom when he showers. He has a very hard time communicating his needs and remembering his basic information like his address or the state we live in. As far as academics go, he is at about a Kindergarten level. As with most everything, he immediately forgets what he learns. He has been diagnosed with severe dyslexia, disgraphia and processing disorder. He was given two new diagnoses- OHI or Other Health Impairment which means he will need significant accommodations for his academic life and developmental disorder. He is tired most of the day and needs constant breaks to rest.  He will never be able to drive or live on his own. He has trouble caring for his basic needs without reminders. We have to help to administer his meds four times a day. The morning med routine that happens before he wakes up is careful dance not to wake him too quickly and cause a massive seizure. He sleeps about 12 hours a night plus multiple rests/naps throughout the day. 


LGS-
In the summer of 2019, after the last EEG, Lex was given the devastating diagnosis of LGS or Lennox-Gastaut Syndrome. This is a rare and very serious epilepsy syndrome which Lex now fits into the criteria as his epilepsy has worsened over the last five years. His seizures are now very dangerous including tonic clonics in his sleep. He has a seizure pillow or anti-suffocation pillow that he has to sleep on for safety. He has two cameras in his room plus a sound monitor. However this has not been enough. We have equipped his environment as best we can to prevent a tragedy but this dog will be one more piece to help us protect him. His increased risk for SUDEP(Sudden Death in Epilepsy) is very high. SUDEP affects 1 in 1000 people with epilepsy. However with refractory epilepsy the risk increases dramatically to 1 in 150. This of course is a frightening statistic! 
With this new diagnosis, he was eligible to start a new med that the FDA is allowing only for the two most severe epilepsy syndromes called Epidiolex. This has been a game changer for many many children like Lex. Our neurologist was very confident in this being the med that finally helped Lex. It has not unfortunately. We started this med in April 2020. We will continue to give it time to work as Lex's metabolism is quite unique. We found this out the hard way when beginning the Keto diet. So in conclusion, this med Epidiolex was our last strong option to help get Lex's seizures under control.


His Service Dog-
We will never give up hope! This dog will be a huge help for us in caring for our son!
Lex has asked for a service dog for over two years now. He has great love for dogs especially huskies. The main picture was him seeing a Husky stuffed dog and asking to get it until he gets a real service dog. What a sweet boy!
Please help us #loveLex



How you can Help-
First, please join us in prayer that we make the best decisions for Lex and our family.

Second, we humbly ask you to share this if you are able. 

Third, any donations will go directly to Lex's service dog and training. We plan to post updates regularly. We expect 3-4 phases in order for Lex to have a trained service dog. 

Phase 1- we hope to get his dog by the end of this month and begin training by end of January or beginning of February. There are a few dogs we are looking at right now. We are looking for special qualities in the dogs as well as the best temperment. This phase will also include basic care and puppy training. Yay!

Phase 2- this will include two levels of training up to a year and a half old. This will depend on the trainer and we are interviewing a few top trainers in our area as well as one in GA. 

Phase 3- we hope this phase will include the service training and passing of certifications. It will also include the teaching Lex/ myself as his handler all the new commands. This phase may take up to 6 months. 
We plan to update you with all the progress and excitement as we move forward on this big step to giving Lex safety and freedom of constant monitoring.


Help us to #loveLex

We know now that a service  dog is needed for our son. He will not only be a life support for Lex and another added layer of safety but we know he will be a good friend for this boy who has so much love to share. Please support us in anyway you are able. We are grateful from the bottom of our hearts.  #loveLex
With much love~ The Butler Family