Sunday, November 1, 2009

Prayer for this dear family...


First off, we are doing well. My fever broke today, and since I am the one bringing up the rear with this flu, I think we are over this virus. However, Nathan has a fever again tonight and a horribly runny nose, so I am suspecting an ear infection or something of the sort and foreseeing another trip to the pediatrician sometime this week. Other than that, we are doing very well.

I come to you tonight begging prayer for the Owens Family: http://www.gavinowens.com/. This is a family whose blog I have been following for some time now, as their 3 year old son has mitochondrial disease...and the mom is a photographer. Hits a little close to home.

Gavin is in his last inning of fighting this awful disease. His parents, along with the help of his team of doctors, have made the incredibly tough decision to move to the final stage of caring for their terminally ill son...just trying everything in their power to make Gavin comfortable. I can not imagine the pain these parents are experiencing seeing their son in this final lap of his journey, as just 6 months ago he was a smiling blonde-headed cutie waiting to tackle life. This disease has just progressed so rapidly over the past 6 months for this little guy. My heart hurts for this family. Really hurts.

I haven't mentioned the prognosis of this disease on this blog before. I don't particularly like to talk about it. If you look up the prognosis of mito, most websites mention that it is "variable". "Variable" is good. "Variable" has a lot of hope strung to its letters. "Variable" means that my son may outlive me. I like "variable".

But then I also read from a few sources, including a paper from the UMDF about mito and overview of the NIH's efforts with it, that children who are diagnosed mitochondrial disease under the age of 5 have a 20% chance of living to the age of 20. And that stings. And then I also read in Nathan's ER protocol letter that "mitochondrial disease is often, but not always, fatal." And that stings.

But what I cling to in those is the "20%" that live in the first statistic and the "but not always" in the second. What I cling to is hope. And what I cling to most is the God of hope...

"Blessed is the man that trusteth in the LORD, and whose hope the LORD is." Jeremiah 17:7

Yes, we do realize that this disease does not offer much hope for the future as we know it on this earth, but we do know a God who does offer MUCH hope for the future. Who offers ALL hope for the future. Who loves us and knows exactly what our future on this earth enfolds...and will always be there for whatever circumstances are to come. And due to that, my mind is at ease...and my heart is comforted. Like I have mentioned before, we have been instructed to "Be strong and of good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest." Joshua 1:9.

Nathan is doing well. He is enjoying life to the fullest right now. He, nor his sisters, realize the severity of this disease. And this will be the absolute first and last time I mention the prognosis of this disease on this blog. We do realize that it is important to be realistic about this disease, but we are also living with the hope that our God will intervene on Nathan's behalf by creating a long and influential life for our son.

But families who are losing their children to this disease constantly weight heavy on our hearts. Please, please remember these families in prayer. Remember the Cole family who lost their 8 year old son a month ago. And please pray for the Owens family in the coming days as they embark on the last leg of their son's journey on this earth.

9 comments:

Nicole, Drew, Jack, Megan, Sophie, and Lucy too on November 1, 2009 at 8:35 PM said...

Amen...
All the Marletts are praying for the Owens family. Karen was the first person to discuss Mito with me. We roomed with them on one of our stays at DuPont when we were searching for answers to Lucy's issues. I can remember her telling me that Lucy's symptoms were similar to many of Gavin's early symptoms. I can also remember thinking that I hope that Lucy does not have Mito; Gavin's issues were so severe. Well, here we are nearly a year later fighting the same disease, though our issues have similarities they are still very different. Karen reminded me when we first got Lucy's diagnosis to "enjoy her and be grateful that she really is pretty healthy in spite of all of her medical issues". The Owens’ family is truly remarkable and has left a lasting impression on our family. We will continue to pray for them and all families who are dealing with mitochondrial disease.

wandaconner on November 2, 2009 at 5:13 AM said...

They are in our prayers!

Mike on November 2, 2009 at 10:02 AM said...

I will pray for them.

dawson20 on November 2, 2009 at 1:59 PM said...

Im so sad to read about Gavin.

This disease sucks.

I too avoid the reality of it all whenever possible.

glad you guys are rounding the bend with this virus and hope for better days to come for all of us.

sending hugs,

Keely

The Gustafson Family on November 2, 2009 at 3:43 PM said...

My prayers are with both your family and the Owens family. With Nicholas's disease being terminal this hits close to home.

Anonymous said...

We are praying. We love you!! Beth, Brian and Matthew

Carmen on November 2, 2009 at 10:24 PM said...

I am sorry to hear about the prognosis of Mito. I am praying for the Owens family and your family too.

Amber Schmidt on November 4, 2009 at 9:47 PM said...

Sometimes reality is almost more than one person can bear... sigh. Reading Karen's words about feeling "safe" inside the hospital walls I can totally relate. When everyone told me Kyleigh was "fixed" I almost panicked. It brings to tears. And for your beautiful family... it just hurts to see so many of our friends hurting.

Heidi on November 5, 2009 at 11:39 PM said...

Amber, like you Ive been following sweet little Gavin for months now and just heartbroken seeing him go downhill so quickly. Its so hard to watch these precious children struggle so, knowing that we're also dealing with the same disease. I feel so blessed Jack is doing well today but this just proves how cruel and unpredictable Mito can be...giving us no idea whats to come of our boy. Following this family has hit too close to home for me. I just have to have faith and like you say, cling to that 20%. Handing it over to god and whatever he has in store for our family.

I keep praying and hoping that little Gavi will just turn that corner and beat this thing one last time, Im beside myself if I believe anything else. Karen and Adam have been through so much and are truly amazing, along with big sis Madi too. May god give them strength and peace in the coming days ahead...and prayers for your family and baby Nate tonight-

Heidi & Jack 6, Mito

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