Life has been busy and full this summer and I think all the big major events have now taken place! This weekend was our Heatwole family gathering here in Powhatan. Each of us siblings (Me, Rich, Evelyn and Ed) take turns hosting. Every four years it is my turn.
My siblings/spouses and parents arrived on Friday evening. We enjoyed supper on the deck and as a side benefit watched six turkeys grazing in the field behind the house.
On Saturday the rest of the gang arrived. There were 40 present with several not able to attend. The kids had a great time playing in the wading pool and playing kick ball and corn-hole. The adults were content to sit and talk and catch up on what is happening in our families and life. I didn’t get very many pictures this year. (I’m not sure what happened to me-the camera buff that I am!)
In trying to pump up the soccer ball with more air the needle broke off in the valve. Obe tried his best but could not get it out.
The “pirate” boy (Ryan Hostetter) collided with another boy a day or so early and took a hard blow to the eye.
We had lots of good food including smoked beef brisket.
Filling the wading pool with water.
Cheryl Yoder and Jase, the newest member of the family.
Let me tell you about Jase…..
Jase was born 4 weeks ago. Remember our journey two years ago with little Ariel who had SMA? This is her little brother and he has been diagnosed with the same disease. This is devastating news not only for Jeremy and Cheryl but also for the whole family and a host of friends and loved ones who love and care for the Yoders.
Jeremy and Cheryl shared with the family where they are at in their journey with Jase and there is exciting developments in research to find a cure for SMA. Forty years ago when our two children died, there was no research, no diagnostic test, no hope. It was a death sentence with no survivors. Then came Truman in 2011 and Ariel in 2012. At that time there was a blood test to reveal the dreaded diagnosis but still no exciting medical research to embrace. I have been keeping a journal as we get information on Jase’s journey.
Family Connections: To those who are reading this and do not know the family connection…. Rich is my brother and his wife is Marj. Cheryl is their daughter and Jase is Rich and Marj’s grandson. The disease first showed up in our family when Gene and I lost 2 children with Werdnig-Hoffman disease, now called SMA: Karla in 1978 and Greg in 1982. Gene has a sister who also had a child with the disease. Years went by and then came little Truman, son of Micah and Krista Heatwole. Micah is Rich and Marj’s son. The disease had once again reared it’s ugly head. Jase.
Jeremy and Cheryl, Max, Bo and Jase
July 16, 2015: Cheryl
He’s here! Jase Marius arrived yesterday – all 9 lb 9.5 oz of him! – arrived yesterday at 3:36pm. Jase means “healer”. Marius, a take off of Mark in honor of Jeremy’s Dad, means “manly”. So grateful for this gift!
July 25, 2015
Richard called to tell us that the blood test has come back and little Jase has tested positive for SMA.
July 26, 2015
Richard & Marj sent the following note to family and friends: Jase’s blood test results came on Fri. His DNA shows the same gene abnormality as Ariel’s. He tests positive for SMA. This is an unexpected blow. Thanks for your prayers for us and ours.
August 4, 2015: Sharing our journey… from Cheryl
We’ve already introduced Jase Marius here. We’re enjoying him immensely!
We learned on Friday the 24th, half of Jase’s lifetime ago, that he is missing both copies of the SMN1 gene – just like Ariel – and is expected to be affected with SMA. In spite of fully knowing our “odds”, we were not prepared for this report. It was extremely disappointing to say the least. Many of you have been praying for our family. You carried us through the journey with Ariel and anticipated this baby (Jase) with us. Here we are in a vulnerable, heart-breaking position and find that we’re able to stand, over our heads in grace. God is with us. You can rejoice in answered prayer!
We maintain that now is the time to trust and to savor life for it is truly a gift. Look at these pictures – can you acknowledge with us that our God is beautiful and kind?
Yesterday we took Jase to the same neurologist who saw Ariel. I was not super excited about the appointment. Jase is not showing symptoms of SMA…”Why are we even going? Just to have him scrutinized and look for the problem we’re praying not to see?” But I did have some questions and it can be difficult to land an appointment, so when they had an opening yesterday we took it.
There’s a lot I could say, but to get more quickly to the point, Jeremy and I – and Jase, but he isn’t concerned one hoot about it. We left the appointment hearts throbbing with hope, kind of floored into silence, with big silly grins on our faces. We had just received really good news for Jase!
There is a lot of research going on right now regarding SMA. Up to this point it’s been, “We’re learning really exciting things, but there’s nothing we can do yet.” That was our experience with Ariel. But yesterday the doctor, for the first time in his career was able to say to someone, “There is a promising drug that is in clinical trials. There is a trial open right now. Your son looks like a perfect candidate.” That someone was us!
There is hope that this therapy could prevent the onset of SMA symptoms. There are no guarantees – this is a clinical trial. Eligible infants are those who have been diagnosed but are not yet symptomatic (which is uncommon). That’s Jase. So! We are extremely excited and grateful. We have blindly placed our hope in our strong God and it is exhilarating to feel like we very likely are beginning to glimpse His answer.
God’s fingerprints are all over the timing of test results, appointments, the clinical trial itself…. We rejoice and worship and continue to trust and pray. The medical people are in a flurry to get things moving so that Jase can enter the trial before he develops symptoms. My mommy heart has urged, “hurry, HURRY!” My heart that has been tucked pretty hard under the Father’s arm says, “He’s got this one. You don’t know how, but everything is going to be okay.”
We will probably be traveling to Chicago this week, yet, for initial screening and possibly the first treatment if everything clears. Probably. Possibly. If. That’s exactly how sure we are about what’s next. Please continue to pray. And be sure to direct all praise to God!
August 5, 2015: A note from Marj
I’m assuming ya’ll have seen the latest developments concerning Jase on FB. We’re about to leave for church, but I wanted to let you know that Jeremy, Cheryl & Jase are flying to Chicago this evening. Jase’s first app’t is at 8:00 tomorrow morning. They’ll be doing a screening to make sure he meets all the qualifications for this experimental test. Jeremys were told to go prepared to stay until Tues. Max & Bo are at Jeremy’s folks in DE. Thank you so much for your interest and your prayers. We wonder what God is up to, what may come of this; what His plan is for our little Jase. It’s pretty exciting, and a bit surreal.
August 6, 2015: A note from Marj
I just got off the phone with Cheryl. They’ve had a big day, are weary and ready for a good night of sleep. But pleased and excited with Jase’s performance today. Like Jeremy said, “he passed his tests in flying colors.” They drew blood for a chemistry panel, checked his urine for whatever, did an EKG, an EMG (shock to his funny bone to test his response – which will frequently show SMA before any other symptoms. His strength is good, they see no manifestations of SMA, and unless something shows up in the blood panel tomorrow they plan to give him his first injection on Mon. They’ll return to Baltimore on Tues.
Just for interest sake, they were picked up at their home last pm. Rode in a shiny black Suburban to the airport. Plane left over an hour late so it was 11:00 when they arrived in Chicago. They were met by a man holding a placard with Cheryl’s name on, were escorted by him to another shiny black SUV to the motel. And were at the hospital for Jase’s appointment at 8:00 this morning. Now after the blood test tomorrow, far as they know, they’ve got the rest of the weekend to wait out (while test reports come back) in the big city. I guess it’s good they’re more used to that than I am. I think I’d be inclined to stay put in my room so I wouldn’t get lost!
Praise the Lord for whatever His plan is and how He is working it out. Thank Him for the strength that Jase has today, for this opportunity, for hope. Pray that they’ll all get a good night of sleep tonight.
August 16: Pat
We do not know the future implications of the clinical testing for Jase. This opportunity is brand new and Jase is the third infant in the world to be admitted into the program since the trial opened two weeks ago. Jase will receive a series of 10 shots over the next 2-1/2 years. At this point Jase is symptom free even though blood test have revealed a grim diagnosis. Each healthy person has a SMA1 and SMA2 gene. Jase is missing SMA1 and has 2 of SMA2. Our family carries the most acute form of the disease which means the symptoms start showing at or soon after birth and their life expectancy is only 1-2 years. There are so many questions. Will God use this as a miracle cure or will it just prolong the evidence of symptoms? What happens at the end of the trial? What are the side effects? Can it really be possible that Jase could live a symptom free life? Why has this disease hit our family so many times? What is the genetic path in our family line?
Our family gathered around Rich, Marj and all their children and prayed for them. This is not just their burden, it affects us all. Micah and Krista are expecting in November and we stand with them as they wait and anticipate the birth of their little one. We value life. We know that God is the creator of all life and we do not take health for granted. In the midst of great sorrow and disappointment we have found the peace, mercy and love in our Heavenly Father in whom we can trust.
Jase means healer. We ask God for the desire of our heart, that He will heal little Jase. We know that good can come from all of our earthly struggles and trials. If Jase is not healed, we pray that his young life will at least help grant healing to thousands and thousands of other children in the future as the medical world searches for a cure. We truly desire for God to receive glory and honor regardless of the outcome.
Links to my blog posts on Truman and Ariel