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Home / Prayer Requests / Rowan Roberts

Rowan Roberts

 

8/23, 11:15 AM

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2

Dear friends and family, Thank you for your prayers and support. The last couple of weeks have been a roller coaster as we received good news at first, then a very difficult update.

Good update: Our sweet boy Rowan had a 24-hour EEG this past Sunday, where the neurology team confirmed that Rowan has responded well to the injection protocol. They did not see any seizures, and we have not seen any seizures at home for over 2 weeks now. Thank you God. We have 3 more weeks of daily ACTH injections before our next follow-up.

Difficult update: Our hearts are heavy this week as we found out our sweet boy Rowan has been diagnosed with a severe mitochondrial DNA disorder and Leigh Syndrome.

This is a rare disorder that inhibits the mitochondria of our cells from producing energy, and a rare disease (Leigh) that causes the central nervous system to degenerate.

There is no cure for these, and life expectancy is often low. At this point, we have been referred to diet and therapy specialists to work on managing symptoms and trying to slow the progression of the disease.

Prayer request: Please continue to pray for Rowan and our family as we grapple with this news. Pray that God would give us wisdom for walking out caring for our sweet boy for as long as God lets him stay with us.

We are so grateful for each of you and to God. Your prayer and support have helped us realize that we don’t have to do this alone. We will keep sending updates as we walk through this.

With love, Austin, Angela, Rosa and Rowan Bear

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” Psalm 139:13-16
#prayerforRowanBear

 

8/13, 8:15 PM
First, thank you all for your continuous prayer. It’s been a challenging and busy week with doctor’s appointments at Cook Children’s Fort Worth and here at home, while still being pretty fatigued from lack of sleep.

Our sweet boy Rowan is on Week 2 of injections and has been more restless, irritable, and having a hard time sleeping during the day. However, (thank you, God) he has been sleeping at night. This is definitely an answer to prayer. Overall, he seems to be tolerating the ACTH injections well.

Rowan had an EEG on Monday that went fine, but we will be back at Cook’s this Sunday for another 24 hour EEG video monitor to see how his brain is responding to the treatment. At this point, the neurology team suspects an underlying genetic disorder that is responsible for his cortical blindness, seizures and developmental delay, so we are being referred to genetic specialists in the near future.

Prayer requests:

  • Please pray for Rowan’s immune health, as the treatment is an immune suppressor.
  • Please pray for the neurology team and geneticists.
  • Please pray the injections help curb the seizures.

To help financially: https://www.givesendgo.com/RowanRoberts

Thank you all so much for the prayer and support and we will keep you updated.

Love, Austin, Angela, Rosa & Rowan Bear

#prayerforRowanBear

8/7, 6:30 PM

Dear friends and family, Our sweet boy Rowan is back home for now, getting much needed rest and sleep without much interruption. Although, we have not been given a diagnosis yet, Rowan is on week 1 of 6 week program of ACTH intramuscular injections to treat his seizures while we wait on further test results. We will try to get rest while we monitor him and report vitals to Cook until we return to Fort Worth this Monday for another EEG.

Words fail to express our appreciation of all of you. Your love, prayer and support are priceless to us.

Please continue to pray for Rowan, that he recovers well, responds to the ACTH injections, and does not get sick during this 6 weeks (the injections are immune suppressing).

Please continue to pray for the neurology team as the test results continue to come in and they get a clearer picture on his condition.

We are immensely thankful for you and will keep sending updates. Love, The Roberts Family
#prayerforRowanBear

8/3, 12:30 PM
Dearest friends and family. Our sweet boy Rowan had another rough night last night in the hospital, having seizures and not sleeping much. Today the neurology team is starting him on a 6 week program of intramuscular ACTH injections to try to subdue the seizures. Today they are doing genetic and mitochondrial DNA tests as they suspect some disorder at that level. They’ve also ordered some heart tests for tomorrow, EKG and maybe angiogram to look at the condition of his heart.

  • Please continue to pray for Rowan to get sleep in between all the testing.
  • Please pray for the neurology team.

Please share the GiveSendGo link. We know we have a tough road ahead but we know all of you are with us and God is with us too. Thank you all, The Roberts Family


8/2, 1:20 PM by Austin

Last night was rough with our sweet boy Rowan having the longest sequence of seizures to date: 12 minutes straight. The upside is the event was captured on the EEG and the neurologist team was very glad to get the data for seizure prognosis. Today he’s still on EEG as they try to capture more episodes and getting more testing done.
Some bad news is the MRI yesterday came back showing Abnormalities where the spinal cord branches to legs, so we will have to stay at the hospital til at least Tuesday. The combo of abnormalities in brain and spinal cord are pointing toward a genetic disorder or disease but there is no diagnosis yet.
Please pray for Rowan and us all to get rest somehow during this time. Please continue to pray the tests help the neurology team get a good idea of what’s going on. Please share the GiveSendGo link for those who want to support us in the accumulating medical bills and costs: https://www.givesendgo.com/RowanRoberts.


8/1, 5 PM by Austin

Dearest friends, Thank you for the overwhelming prayers and support right now as we come to the end of day 3 at Cook hospital in Dallas Fort Worth. Our sweet boy Rowan just got out of MRI of spine and is recovering well. As he came off anesthesia, he was smiling and nurses said he was the highlight of their day.
Next up: We spoke to the neurologist team this afternoon and they showed us the latest MRI with large spots of abnormalities and concern.
They want to keep Rowan longer and do another 24-48 hour EEG and additional testing.
Please continue to pray for Rowan as we have been told he has multiple serious brain issues simultaneously occurring. Also for Angela who did not sleep last night, and for little Rosa who is worried about her baby brother.
Many of you have reached out asking how to help our family during this time. It’s https://www.givesendgo.com/RowanRoberts.
We are so grateful for you all and will keep posting updates. Love, The Roberts Family


7/31, 5:45 PM by Austin

From Austin Roberts … Dear intercessor, Hey friends, Our sweet boy Rowan did great with the MRI yesterday, and handled recovery like a champ. Unfortunately, we got a call this morning to come into the ER at Cook Children s Fort Worth and we just arrived at the hospital. The neurologist team here is very concerned with the MRI results and have admitted Rowan for extensive testing today and tomorrow. This includes lumbar puncture, genetic testing, EEG and another MRI.

Prayer requests:
Please pray Rowan handles the sedations, anesthesia and tests well.
Please pray we get clear diagnosis/prognosis, and for us to figure out medical bills in all this.
If anyone wants to reach out, please text Austin and Angela at 903-707-5848. Thank you all, Austin and Angela Roberts

7/30, 10:00 AM by Austin

MRI went well and Rowan is recovering from anesthesia. Please pray a neurologist can look at the results soon. (They were at Cook Children’s Hospital in Prosper.)

7/29, 10:30 AM by Austin

Hey friends, first, thank you for all your prayers, generosity and support last month. It’s hard to overstate how much that’s helped us.

Update: This has been a rough two months, as we still haven’t had EEG or MRI as his case was not deemed an emergency, so we have been waiting for appointments. This week has been especially tough with Rowan. His seizures have increased in length, frequency and severity, and he’s started having them in the night too. He’s become extra sensitive to light, sound and temperature and is quite delayed in development milestones. All in addition to having lost most of his vision. What comes next: We finally have his MRI tomorrow and are hoping for an EEG in the next week, so hopefully we can get some answers and direction.

Prayer request: Please pray we get connected with the right neurologist, epilepsy specialist etc. soon, as at the moment, he is not any treatment plan. Please pray for us to figure out medical bills. If anyone wants to reach out, please text Austin and Angela at 903-707-5848. Thank you all, Austin and Angela Roberts

6/1, 3 PM Support the family: https://mealtrain.com/qg2q09

5/31, 3:15 PM
Hey friends, Thank you for all the support and prayers.

We came home from the ER last night with some good news and bad news.
> The good news is the CT scan came back clear of any major things so that eliminates tumors, bleeding, fluid or swelling.
> The bad news is they did identify what they call “mildly dysmorphic frontal horns of both lateral ventricles of the brain”.

We have an EEG and MRI scheduled for June 26th to get more information before moving forward with treatment.

We are doing ok and Rowan is doing well except he had a seizure-like episode again today, and after having his eyes checked, it appears his vision loss is not an eyesight issue but is due to the underlying neurological condition.

Please continue to pray for us and him as it is clear we have a long journey ahead.

We will keep sending updates as we get them.
Thank you all. – Austin and Angela

 

5/30, 12 Noon
Hey CCF family , We are at the ER this AM with our baby boy Rowan. He will be one year old on Tuesday. He is having seizures yesterday and today, and lost most of his eyesight – among other symptoms- pointing towards an underlying neurological issue. We are hoping and praying for CT and/or MRI soon. Please pray for us and especially for him. We will continue to send updates as we receive them. If you would like to reach out, please contact Austin at 903-707-5848. Austin & Angela Roberts