Helping baby James and the Kennedy family

Campaign Created by: Jim Sanderlin

The funds from this campaign will be received by Emily Kennedy.

Goal: USD $40,000
Raised: USD $ 24,639

James Matthew Kennedy surprised his parents Emily and Matt with an early delivery on January 15, 2023! Shortly after he was born, he was diagnosed with a rare condition called esophageal atresia/tracheoesophageal fistula (EA/TEF). The top portion of his esophagus ended in a blind pouch and the lower portion of his esophagus was connected to his trachea. He spent six weeks in NICU at Levine Children's Hospital in Charlotte, North Carolina (65 miles from home near Forest City, North Carolina). While at Levine, James had multiple surgeries and was cared for so well by an expert team. Ronald McDonald House graciously hosted the Kennedys, and even included Emily's mother, Janet as her presence enabled Matt to continue working.

James fought and made massive strides in his first few weeks and months. His progress was hailed as remarkable! After dealing with some complications with solid food in November and early December, James required surgery to widen his esophagus at Levine on December 11. The team also checked his original repair sites for scar tissue.

The surgeon called Emily and Matt on December 21 and explained that James has a secondary birth defect, congenital esophageal stenosis; it’s very rare with less than 1% of kids with EA/TEF having it. Baby James has a ring of cartilage surrounding his esophagus. It’s not an immediate emergency, but it must be taken care of soon.

The Kennedys are being referred to Boston Children’s Hospital for treatment. Despite Levine being a leading children’s hospital, James’ current team there has never treated this and doesn’t feel comfortable doing so for James. No one at Levine has ever treated it, including his surgical team and GI specialist.

Please pray for Emily and Matt as they contemplate options for treatment. The surgeon believes esophagus reconstruction surgery should be a last resort due to serious complications that could ensue with James’ already complicated anatomy. There are other treatments, but they seem so harsh.

God’s plan for baby James is perfect. He knew all about this before James was even born. Still, this is an extremely hard thing to go through as a parent.

The mental, physical, and emotional trauma has been severe for this young family. As baby James’ uncle and Emily’s brother, I’ve taken it upon myself to set up this fund for the family’s growing medical bills.

Despite having insurance there is currently $20,000 in medical bills with future bills on the way from consultations, treatment, procedures, and surgery in Boston. Insurance is fighting them. Personal savings have been spent. 

Would you pray for this sweet baby and his parents?

Would you consider helping financially? Your generosity is sincerely appreciated and will make a difference.


Psalm 62:5-8

For God alone, O my soul, wait in silence,

    for my hope is from him.

He only is my rock and my salvation,

    my fortress; I shall not be shaken.

On God rests my salvation and my glory;

    my mighty rock, my refuge is God.

Trust in him at all times, O people;

    pour out your heart before him;

    God is a refuge for us.

UPDATES

Update #4
April 6, 2024
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from Emily:

Psalm 126:3 “The Lord has done great things for us, and we are glad.”

I wanted to let y’all know another huge blessing and answer to prayer. We just got the call that we will be able to stay at the Ronald McDonald House @ Boston Harbor. This is nothing short of a “Thank you, God” moment for us. Matt will be able to work remotely from there and we will have our own little apartment complete with a kitchenette and laundry machines. We were content with the hospital hospitality apartment we had reserved but staying at RMH checks the boxes of several specific needs that we have. What a gift from the Lord!

Thank you so much to everyone who has been praying for us. We leave for Boston in 2 days!

Update #3 Boston details coming together
March 16, 2024
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Thank you all for your continued prayers and thank you to those who have given to financially support us! We are planning to arrive in Boston April 8th. Matt will be driving up and Emily and James will be flying. We are still working out airfare details but we got word this week that we have a place to stay for the entirety of our visit! Our application for hospital patient family housing went through and will be able to stay at one of the hospital hospitality facilities about half a mile from the hospital. This is a huge praise for us. It is a very nice old Victorian home that they have made into small apartments with a communal kitchen etc. We will definitely be able to make it a home away from home.

We have appointments and meetings with James’ doctors all day Wednesday, April 10th. Surgery is scheduled for early April 11th (exact time tbd) and we will be inpatient for 8 days. This surgery will be a pretty major operation and we covet your prayers for James. He will be mildly sedated the week following as he heals. One week after surgery, he will have a dilation procedure and the surgeon will remove the drainage tube and ensure he is healing properly. If all looks well, we will be released to outpatient the following day.

He will be having outpatient dilation procedures, one a week, with the last one being May 9th. If all goes well, we will be free to leave Boston May 10th. We will have to travel to Boston for dilations every few months for the foreseeable future, as well. We do not yet know when we will be released to local care. As always, we so appreciate your continued prayers for us as we continue to plan for our trip. We will continue to keep you updated!

Update #2
February 26, 2024
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from Emily:

Thank you for the prayers and support! We had a profitable meeting with the team in Boston. The current plan is to perform the usual stricture protocol with James, just in a more gentle manner so we can hopefully avoid a perforation of the esophagus narrowing and avoid a major surgery for now. James’ stricture is over 1 cm long, 7mm wide, and is comprised of scar tissue and cartilage. *for reference, the rest of James’ esophagus has been dilated up to 12mm* The surgeon will go in and perform incisional therapy and cut linear lines along the stricture and perform a gentle dilation (this significantly lowers the risk of perforations). We will be inpatient for around one week while we wait for him to heal.

Around the one week mark, the surgeon will perform another endoscopy and make sure James is healing well, remove the drainage sponges/tubes, and perform another gentle dilation. If, after that procedure, James is able to eat by mouth, we will be released to outpatient care. If he’s not sufficiently healed, we wait some more. We will need to be in Boston for a minimum of three further outpatient endoscopies and dilations.

Our doctor said to prepare to be in the area for 4-5 weeks. After that course of treatment, we will need to return to Boston every few months for dilations before they will consider releasing us back to care in Charlotte. Our doctor was thankful that the stricture was diagnosed earlier than most. That is definitely in our favor.

Around 80% of babies go on to recover well and only need occasional dilations. The other 20% go on to need the esophageal restructuring surgery. Only time will tell how James responds to this treatment and what the outcome will be. We do not have a date yet but that is the next step. This call confirmed in our mind that this is the right hospital for us. Please pray we would be able to work out details like where to stay for 5 weeks etc. I will be in touch with the hospital administrator soon to get some information on that. We will keep you posted when we hear an admission date.

Update #1 - next steps
December 29, 2023
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Thank you so much to all who have donated. Here is an update from Emily regarding next steps:

"Please continue to keep us in your prayers regarding the treatment for James in Boston. I’ve been on the phone with them yesterday and today, talking through preliminary plans and what treatment will be. I think we’ll be there a minimum of two weeks, but I think to be realistic we’ll be there 3-4. There will be 3 surgeries minimum with one being pretty major surgery. I don’t have dates yet, that will be the next phone call but pray we’ll have wisdom on how to get there etc. I really need mom to come with us, Matt is going to work from the hotel/ronald McDonald and can’t take all of this time off. This is going to be very James and all of us but we can’t put it off til he’s older, it needs treated asap. This hospital created the treatment plan for his type of issue so I know he’ll be in the best hands possible."

Your support of this precious family is sincerely appreciated during this difficult time.

God Bless you!

Jim

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