Beckett's Fight: Rasmussen's Syndrome

Our hearts have never been heavier. This is a new level of agony. We grieve for our precious son, Beckett, who just received terrible news. But we also grieve for ourselves. As Christian parents we’ve long believed that our children belong to God: when they succeed, He gets the praise; when they err, they are His problem to address. But now, in the face of Beckett’s recent diagnosis, those truths feel like platitudes—trite cliches that may cogently crystalize Biblical truth, but now feel hollow, empty, and unsatisfying.

Today, we feel like David in Psalm 31:9-10, “"Be merciful to me, O Lord, for I am in distress; my eye is wasted with grief, my soul also with sorrow. My life is consumed with anguish, and my years with sighing; my strength fails because of my iniquity, and my bones are wasted." We know that we’re supposed to “consider it pure joy” when we face trials because the “testing of our faith produces perseverance.” James 1:2-3. But today, we don’t feel joy; in fact, we can’t even see joy from where we sit. We know God is sovereign, in control, and never surprised. But today it doesn’t feel that way. Today, we’re broken. Our tanks are empty. It’s hard to see that God’s mercies will be new tomorrow morning…or any morning after that. We can say the right words and proclaim the right truths, but today, we just need our family and friends to bear our burdens. We can’t do this alone, of that we are certain.

On December 10, 2024, Beckett experienced his first diagnosed seizure. Though we now suspect he had been suffering from smaller seizures for months, the big one hit while he was at school on 12/10. After emergency treatment and many follow-up visits to Fort Wayne doctors and hospitals, we believed his seizures would end via common anti-seizure medication. But they didn’t; in fact, they persisted while the Fort Wayne doctors kept increasing dosages to max levels and trying every drug known to prevent seizures.

Through a small miracle revealing a relational contact to the University of Louisville’s pediatric neurological seizure center (yes, a few of these exist across America), we were introduced to Dr. Clements, a specialist in the field. Remarkably (and what also feels like tragically), after only a couple weeks under Dr. Clements’ care and following Becket’s recent admission to Norton’s Hospital in Louisville, he has been diagnosed with Rasmussen Encephalitis (RE) (a/k/a Rasmussen’s Syndrome).

Diagnosed fewer than 500 cases worldwide, RE is awful for at least two reasons. First, it knows no drug-related treatment. Second, the only known treatment is to disconnect half the brain from the brainstem, forcing the remaining half of the brain to relearn all functioning over the next 2-10 years. Stephen and I cannot explain the shock and trauma of hearing the diagnosis. Because he is only 5 years old, it’s likely the remaining half of his brain will fully learn the functionality required to live a “normal” life.

It will likely take a few more months before we know when the surgery will occur. The process to prepare medically for something like this is long and complex. We’re unsure when we’ll be home v. in Louisville. We’re certainly unsure what the future looks like when it comes to Beckett’s likely recovery. We only know that we need help.

For those who want to help, please consider the following:

I. Prayer. James 5:16 says the prayers of God’s righteous are powerful and effective. Fortunately, we know many who love Jesus and whose lives emulate righteousness. We implore you to pray—please pray hard, often, and continuously. We believe God can and will heal Becket, but even if He doesn’t, we will praise Him anyway. Specific prayer requests:

a. Miraculous healing.

b. Wisdom to know when to do the surgery. Many factors influence when it should occur, but wise, experienced doctors disagree.

c. Peace and understanding beyond our years and maturity.

II. Encouragement and moral support. We are long past the end of ourselves. We have no gas left in our tanks. We need your support and encouragement.

III. Financial support. Our health insurance is through a Christian risk sharing service. It’s already woefully inadequate to cover bills that almost certainly will be in seven figures.

IV. Home support. Please contact Ang Smith ([email redacted]) to schedule assistance with cleaning the Murray house, laundry, meals, etc.

VI. Solitude. So many friends…so little time. We wrote this note so all our friends and family would understand the same reality. If we tried to respond to every text and call from our wonderful friends who want to help, we simply could not. Towards that end, while we appreciate everyone’s expressions of love and support, please know that we may not respond when you call or text. We love you, nonetheless.

When we lay down at night with Beckett in his hospital bed we feel “hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” II. Cor. 4:8-9

We feel that way for two reasons. First, God is sovereign; His Word is true; and He has a perfect plan for Beckett’s life. Second, we believe that we have one of the best support networks possible: family, friends, church, co-workers, neighbors, and more. We are blessed beyond measure. Thank you for caring enough to read this long post. We love you all and are so grateful for your friendship, prayers and support.