“I thank my God upon every remembrance of you, always in every prayer of mine making request for you all with joy, for your fellowship in the gospel from the first day until now, being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ” (Philippians 1:3-6)
When it was suggested that we have a Spaghetti Benefit Dinner to raise funds to pay the medical costs associated with treating my four children with Tuberous Sclerosis Complex (TSC), I’ll admit I had my doubts that it would be worth the effort. But, even a few hundred or, God-willing, a thousand dollars would help. There were similar doubts as the congregation and committee struggled with the details of the event and after initial ticket sales were lacking.
And then donations started. Before a single plate of spaghetti had been served, the gifts received exceeded our highest expectations. We had already reached the goal for the Thrivent match. And then, the event served one hundred and forty people with $1,900 in ticket sales. And the donations keep coming! To date we estimate total receipts of $12,000 (includes the Thrivent match.) Thanks be to God!
Because of your kindness, we will be able to repay outstanding medical bills from years’ past, cover this year’s costs, and even set aside funds for next year. There are no suitable words to express the depth of our thankfulness for your generosity! There are so many people I would like to thank. You’ll have to forgive me if I neglect to thank you personally. To the congregation, to the committee, and to all fellow saints here and around the country—thank you!
Every day I’ve been waking up with a prayer and song of thanks for the extraordinary love you have shown to us. The Holy Trinity has given you a spirit of generosity that defied our hopes. We, the Gillespie family, want to thank you for your generous support. We are overwhelmed by your love. We rejoice and give thanks to God for the amazing providence He has worked through you!
There are no words to describe what happened. We didn’t see any warning signs. When Naomi’s infantile spasms began, we were paralyzed just like her. We didn’t know what to do, where to go, or what was happening. It was every parent’s nightmare, to watch their own child suffer.
Naomi’s “head bobs” seizures put her at risk of physical injury and soon she was in the emergency room. She began her first anti-seizure medications. We were referred to a pediatric neurologist. He suggested that Naomi had a disease called Tuberous Sclerosis Complex. But, he wasn’t sure and wanted to consult the literature. We hadn’t ever heard of it either. Even after our first consult with a doctor and a simple Google search, though, we were confident that was the diagnosis. And after further examination, the diagnosis was confirmed.
Next the questions came and there were so many. What brain damage had resulted from the epileptic spasms? What were the treatment options? Who were experts? How is the disease treated? How would we pay for this as a graduate student without family insurance? And what did this mean for Naomi’s future? What would we do as parents? How do you raise a physically and mentally disabled child? Where did it come from? And what about the other children?
Only a few months later I received my call to Grace Lutheran Church in Dyer, Indiana, and was ordained into the office of the Holy Ministry. Now, in the early stages of the diagnosis, we were to pack, uproot, and move across the state! Naomi hated the move. She cried when she saw the house empty. We didn’t know then that her disability makes her very sensitive to her environment and routine. It was hard on all of us.
But despite the challenges, we were blessed to be welcomed into a caring community of believers at Grace, and also, to be in proximity to specialists with keen awareness not only of treating Naomi’s seizures but also of the particular needs of the disease. Our specialist at Children’s Memorial in Chicago is aware of new seizure medications specifically engineered for this disease. She is and continues to be relentless in trying to stop all Naomi’s seizures, both those we see and those we don’t.
And infantile seizures are only part of the challenges that lay ahead for Naomi. She needs special therapy for the learning, speech, and occupational disabilities. These disabilities are a result of the brain damage from those early seizures. We need to watch for tumor activity not only in the brain but also in every major organ. And we need to be prepared for potential brain surgery if the seizure medicines stop working. The prospect of surgery is daunting.
Naomi is our fifth child. After Naomi’s diagnosis, we evaluated our other children for the disease. We learned that our two oldest children, Ethan and Else, were having both clinical and subclinical seizures because of brain tumors. They too require medication and frequent testing. And then, Esther (#7) also was diagnosed as well. Four of our eight children are diagnosed with TSC, each with varying degrees of severity. While three of four are responding to medication, Naomi continues to require frequent changes to her medication.
Tuberous Sclerosis Complex (TSC) requires all four children to receive annual or biannual testing to monitor the development of the tumors in their brains as well as heart, kidneys, eyes, lungs, and skin. These include overnight EEG for seizure activity, MRI for brain, EKG for heart, MRI for abdomen, and eye exams. The required medicines, treatment, and hospital visits are a significant financial strain and burden of time and stress on our family.
Last year we submitted $310,000 in medical claims to insurance with $160,000 of that total for Naomi’s medicines alone. We are responsible for significant co-payments and the annual family deductible under the medical insurance plan available to us. For example, we needed to pay a whole month’s salary after the first of the year to receive the essential seizure medicines. Because the TSC specialists are out-of-state, no Indiana assistance applies. We also have needed to pursue nutritional methods not covered by insurance. Nutrition has helped to control the negative side effects from the seizure medications.
We hope for continued research, treatments, and God-willing a cure for this genetic disease that has affected our family greatly. More research needs to be funded to improve the prevention, diagnosis, and treatment of TSC—and ultimately cure the multiple manifestations of the disease. Early TSC research has served as a gateway into gaining a better understanding of epilepsy, ASD, diabetes, cancer, and other disorders. Meanwhile, we are utilizing the best care available in our area.
“For as the body is one and has many members, but all the members of that one body, being many, are one body, so also is Christ. For by one Spirit we were all baptized into one body—whether Jews or Greeks, whether slaves or free—and have all been made to drink into one Spirit. … [and] those members of the body which seem to be weaker are necessary … And if one member suffers, all the members suffer with it; or if one member is honored, all the members rejoice with it.” (1 Corinthians 12:12-13,22,26)
We, the Gillespie family, want to thank you for your generous financial support. We are overwhelmed by your love and sympathy! The road ahead is unknown, but we know you will walk it with us. Please keep us in your prayers.
Peace to you, dear Brothers and Sisters in Christ,
Now as the Church entered the time of Lent, we would like to bring to your attention a part of the sermon that Pastor Pavel Zayakin said during the Ash Wednesday service in the parish of Saint Luke in Abakan.
Where your treasure is [Matt. 6:21], brothers and sisters? Or, is this question incorrect? Because everyone has his own treasure, in a bank account or under a mattress; for some of us their treasure is children or a work, or a dream… <…>
And sometimes people dream together. Isn’t it much easier to achieve anything together? Do you remember how we were forced to build the “best society on earth”, so that at least if we did not reach it, our children do it… It was the same dream as an earlier one to build a “tower whose top is in the heavens” [Gen. 11:4]. The socialism and the Tower of Babel were the most vivid collective dreams, but both had the bad end. And you know why, don’t you? Because there was no God within these collective dreams. Or, let say more precisely, there were humans who tried to take His place. It was similar to the first “collective dream” near the Tree of knowledge of good and evil, “You will not surely die… you will be like God” [Gen. 3:4].
So much blood was poured n the name of these collective dreams, and it still flows like water. All because this is a greatest temptation to force people to follow your idea, your ideology. May be, not everyone “will be like God” according to this ideology, just whose who are closer to a dictator ruler. And all others are just a “building material” to be consumed for the next “tower of Babel.”
If you know history, you remember that humans have always tried to climb up to the Heavens, and the Babel tower was only one of such attempts. And it is still today, after the centuries of pyramids, ziggurats and mausoleums humans are working hard to build new ideological “skyscrapers.” <…>
But none of our aspirations and efforts to reach the Heavens by ourselves will be successful. All our towers will turn into ashes sooner or later, like our bodies will turn into dust. We can not “breath the breath of life” [Gen. 2:7] in our towers, all our attempts will be buried in history: Roman Empire, Byzantium, “Moscow, the Third Rome”, communism, the Third Reich[http://en.wikipedia.org/wiki/Nazi_Germany], the “Russian world”…
All our human attempts, which yesterday seemed to be the last step up to Heavens, will turn into the cold ruins in museum of humankind.
The answer is that we are only dust and ashes. And all plans will fall, and our dreams will be crashed. Because there is only one way to reach the Heavens, the one that begins with repentance, in the humble confession that by nature we all are only “dust and ashes.”
In the beginning the Lord God formed man from the dust of the ground [Gen. 2:7]. And we are still alive today only because He continues to “breath His breath of life” into us. Only His breath is able to give us eternal life. <…>
Every year, these ashes touch our foreheads. “For you are the dust, and into dust you shall return” as we say at a funerals. But every year God gives us a chance. Because the ashes that touch us have salvific form of the cross. This is because Christ came to save us, to fix us, to change our dreams, to crush our towers. And to elevate us to His heavens where our treasure is. Amen.
We wish you blessed time of Lent!
Please pray for the Lutheran clergy and laity in Siberia.