Good Afternoon, All! My name is Kevin Shipley, and I am a friend of Tina Lillard, the woman who initially started this effort about 2 years ago. In 2012, Tina started on a journey with her son Tyler who suffers from epilepsy, has a brain tumor, has lost his vision, and who is autistic/ADHD. Tyler (and Tina) have been through many surgery attempts, surgeries for his vision, countless doctors appointments, visits to specialists, etc. Even though Tyler's health has stabilized (after losing his eye sight with little possibility of restoration), Tyler still struggles daily with taking various medicines, not feeling well all of the time, and not being able to do all of the things most active, athletic boys want to do (play football, do laser tag, swimming, etc.). Tyler is however, an avid wrestler.
Last year, there were various fundraisers to help Tyler and his mother financially. I do know Tina has been diligently working with the providers to pay this and other balances off. At this time, Tina has not given time or thought to the fundraiser part of the journey due to just caring for Tyler and making sure he is ok.
I personally know that Tina gives everything she has for Tyler (financially, time, patience, spiritually) . However, sometimes that is not enough with everything he has going on. I wanted to pick up where the generous people that helped her last year left off. I'm trying to work with individuals to start a foundation to help Tyler (and many other children/families in the same situation as Tyler).
I am going to first assist her with this journey, by (1) first picking this back up for her to assist in her efforts and promote awareness about epilepsy, (2) start the campaign back off by donating $100, and (3) ask that you share and do the same (any amount and share the page/word). Please contact me with any questions at firstname.lastname@example.org
Good Morning All, I am happy to report that Tyler has had another awesome 5 days....we have been seizure free these last 5 days (tics are still prevalent, but no seizures). I know it is a combination of the doctor's plans and the prayers of all of you around the country. I must say I could not have done this alone. I know we have a long way to go, but I am enjoying and reaping the benefits of baby steps at this point. We are gearing up for another hurdle - school! I am excited and nervous about 5th grade, but I am grateful to all of the staff at Tyler's school because we have been in contact about a plan for the upcoming year. More to come.
I am so happy to report the fundraising efforts of our hometown (Johns Creek, GA) community. A total of $13251.90 was collectively raised in a variety of fundraising efforts.
Since this Team Tyler event was publicized (and I am eternally grateful for the group that was a part of this), the online contributions increased by $6,269.
I am very happy to report that with this $40,000+ raised online (and offline) AND with the $30,000 my family has paid out of pocket, we have successfully reached and exceeded anything that I every imagined this to be when I started this effort back in March.
To all of you, we are very grateful, and words can't express my appreciation to the monetary AND time sacrifice all of you have made. Although, the final bill has not been paid (and there are many more to come with upcoming treatments), I know that we will have excess (because that is what God has laid ahead for me - more to come on that later). I would like to announce the initial planning stages of the "Tyler Lillard Epilepsy FOUNDATION." This will be a non-profit foundation that will assist families in financial need of certain expenses during their hospital stay. I will tell you more in the near future as this project is in the initial planning stages.
We love you and continue to solicit your prayers, kind words, and all that you have offered to Tyler and my family.
Good Morning, All - I am sorry I have not been on here in the last week. I have been working and trying to prepare for the upcoming school year. A quick update on Tyler: he has had an awesome week! He has been seizure free (still has tics, but I'll take them) this week. Also, he has been very happy and NOT TIRED at all. I am so pleased that this bout of medicine may be working and balancing out (fingers crossed). The doctors have even decided not to change the medicine for next week. That is phenomenal news (I'll take baby steps).
Also, we have the final numbers from the Team Tyler fundraiser (thankfully donations were still coming in after the fundraiser). I will be posting those numbers later today. Have a great week.
Quick Update for all of you. We hav been to the doctor twice this week (yep, and it's Tuesday). Tyler still gets blood draws almost once per week. I still haven't made a decision on what the next steps are for Tyler's treatments. The options FOR are (1) continue radiation in Jacksonville (Mayo), (2) look for another method (SEE ATTACHED ARTICLE....VERY VERY INTERSTING - AND NEW! I keep telling people there are new technologies that are out there and that become available everyday - it's called SCIENCE...). This is something that was discussed at Tyler's last appointment, (3) DO NOTHING (for now). I am leaning towards just waiting it out and allowing the experts to get these seizures (totally unrelated to brain/eye issues and tics) under control. I am continuously leaning on God for direction. I hear Him say, "Be Still for now. You have time to make a decision."
Thank you for your continued and effortless support for Ty. Please continue to pray.
Hope everyone had a great 4th of July holiday (we did) and a great week! Just a quick update. I am still waiting on the final report from Mayo (I have some parts, but I am waiting on the neuropsychiatrist and the neurologist and the ophthamalogist reports). I just want to say that I have received some extremely kind words of encouragement this week. As most of you know, the feeling of hopelessness began to take over, but I have talked to some phenomenal prayer warriors (local and afar), and I just appreciate the uplifting words and spirits that all of you have for my son and my family.
Although, seemingly the road is over, it is not. I think medicine is a funny thing (and I shared this with someone earlier this week: I am a scientist/chemist/engineer to the heart; I live for science - until it deals with my own child, then all science is out of the window, and science of motherhood..smile...takes over). I think now they are ruling out some of the treatments that they can and can't give Tyler in order to narrow down what they can do.
Tyler had a great week until last evening. He had a seizure (grand mal) on late Thursday evening, which has put him in a postictal state (basically he has slept/is sleeping for hours on end - sound asleep). All I can say is UGH and sigh.
I pray all of you have a wonderful weekend. I know we are going to REST!
PS We are still awaiting the final numbers for the HUGE fundraiser. With us leaving and donations still coming in AND the holiday AND vacations (LOL), those numbers are slowly trickling in. I (and the Team Tyler teamsters) appreciate your patience.
Hello All - I appreciate your patience and support with me through this difficult time. I know many of you have been wondering and inquiring, and unfortunately, I didn't want to provide an inaccurate update. Here is an update from the Mayo Clinic:
The neurosurgeons attempted to surgically remove the tumor last Thursday. During the MRI, they discovered the tumor is inoperable. It is pressing on/wrapped around the oprtic nerve in an awkward position. Now, from this (and several more tests), they discovered the mass is not cancerous (never has been) and it will ultimately affect his vision - leading to permanent blindness. It was also determine that this is not causing his epileptic seizures. The next plan (since removal is not an option) is to shrink it through a radiosurgery/radiation process. Options are being explored (for location convenience and possible insurance purposes) on where this will/can be done.
During this visit, it was discovered through an extensive brain monitoring process (vEEG), that the different seizures have an unknown cause. It was mentioned that 70% of people who have seizures have no know cause. His medicine for siezures is being extensively adjusted to begin to control his seizure activity.
Finally, a third diagnosis was discovered. This is/was extremely surprising as it is something totally unexpected. The seizures that Tyler was having were not seizures (determined on the vEEG). Tyler has tic disorder, not Tourette's (because he does not have vocalized outbursts). He has about 30-50 tics (eye rolling back, throat grunting, involuntary face and shoulder movements, etc. - originally thought to be seizures) per day. There is no immediate curefor tic disorder. it is something that will continue to cause him to lose focus (along with his visual impairment possibly) and continue to cause him attention concerns in the academic setting.
Insurance update (ugh): even though, he didnt have the surgery, he does still have some diagnoses not covered by his insurance. He was also seen by a team of specialists and had extensive testing and monitoring (put to sleep twice) at Mayo. So, with all of your donations (thank you, thank you, thank you), the fundraising outside of this page (totals updated soon), and the out of pocket payments I have made, there was a substantial amount paid towards his final bill. I am forever grateful to all of you.
Finally, Tyler is doing fine. He knows that he will be continuing to fight the 3 above mentioned things, but he is a fighter.
And I am exhausted, frustrated, prayerful, tired, hopeful, hopeless, sad...all in the same breath. Please, PLEASE continue your prayers for Ty. He is still on the journey.
Good Morning Friends & Family. I'm overtaken by a wealth of emotion at this moment. We are here at the Mayo Clinic (after 2 days of traveling) and I can't help but just share this surreal feeling. I'm thankful to each one of you for (1) allowing me to promote the awareness of epilepsy and how it affects my son and our family, and (2) for your contributions (both monetary and spiritual) that will allow me to provide this experience for my son with no distractions while disputing with the insurance company.
Please don't stop praying for my son. One person wrote to me (the real journey begins now,, thanks Amy W.). I will be posting (as soon as I know) how to send letters, cards, etc. But I do read emails (and I try to respond).
We are off to our day of testing....until later.....
Good Morning online family! We are hours away from heading to Mayo Clinic, and I think Tyler has got to do ALMOST everything he has wanted to do in these last couple of months...LOL.
On a serious note, I can tell he is beginning to process the reality of the situation becauuse his line of questions have become more specific and he is focused on the future. He did ask about wrestling, which is wonderful he is thinking about the future. More to come as he spends the day with Grandpa celebrating his 70th birthday!
Good Evening...I haven't been on here in MONTHS. My apologies as I know many of you used this to keep up with us. Well, I do want to start off saying THANK YOU to all of you for your generous donations AND your continued prayers. Not only are we fundraising on this site, many people are also doing and have also given their own separate/private fundraisers. Words can't express how grateful I am to each and everyone of you. I'm also thankful to the vendors, suppliers, volunteers, venues, etc. for giving their time, resources, etc. to make last Wednesday's fundraiser to be very successful. (A very special thank you to Mr. Jason Snelling for giving his time and his family to our fundraiser as well. He also shared some very personal stories with me to make this journey easier).
As we get closer and closer to the surgery date (Thursday, June 20), my emotions are getting the best of me. I am very excited this time is now here, but I am very very VERY NERVOUS on the "what might happens." I know with ALL of you praying friends and family, we are covered, and I also know and feel that my God didn't bring us through all of this to just leave us. All I say is let His will be done.
Finally, I do plan to blog on this site and on facebook on our journey. So, please stay tuned. Until next time, please continue to PRAY WITHOUT CEASING...love each and everyone of you...Tina
Tyler's journey with epilepsy began 1 year ago (March 2012) when he had a series of grand mal seizures (unknowing at that time what these episodes were) on morning while getting ready for school. After many doctor/specialist appointments, emergency room visits, hospitalizations, medicine trials, misdiagnoses, tears, and lots of prayers, we found out Tyler has a brain tumor. We also found out that Tyler has 5 of the 6 types of seizures: grand mal, absence, myoclonic, clonic, and tonic. At this point, the neurologists have treated the most severe type (grand mal) with medication. However, there is currently no medication that treats all 5 types of seizures at the same time. The doctors also do not want to give him medication that may counteract his current seizure medication AND his ADHD/autism medication (another story). Tyler's condition is growing progressively worse (except for grand mal seizures), and he is beginning to show signs of brain deterioration (per the doctors). We are in the process of trying to become seizure free - or get as close as possible. We were put on a waiting list at the Mayo Clinic 9 months ago, and I am happy to report that we have been taken off of this list and in the process of scheduling an appointment in the next couple of weeks/months. Tyler's neurologist, neurosurgeon, and neuropsychologist are confident that this is a step in the right direction to a boy who wants to continue in sports (see pictures), especially the sports he has been restricted from: bike riding, swimming, and football (his favorite). With the grace and mercy of God and the help of all of our family and friends, we are requesting a donation to aid in the expenses of becoming patients at the Mayo Clinic. Your donation will help alleviate the burden of medical expenses (not covered by insurance), travel, lodging, etc. during this time. I am truly a believer in more people helping a little to reach a goal than less people helping a lot. Tyler and I appreciate any donation that you can and will give at this time. Finally, if you would prefer to make a donation by check, please make check out to: Tyler Lillard Epilepsy Fundraiser and mail check to: Tyler Lillard Epilepsy Fundraiser Attn: Virgil E. Martin PO Box 184 Colp, IL 62921-0184
*Tyler is a resident of Johns Creek, GA, and he is a 4th grader in the North Fulton County school district.