Hope for Rawson

**14 year old son in ICU with Lyme disease. Meningitis. 104 fever. Delirium. Non-responsive to treatment.**

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As most of you know, our daughter Hope was born in 2018 with seriously complex kidney disease and a multitude of other diagnoses. In March of 2023, she went in to Boston Children’s Hospital for a kidney operation that should have been the happy hopeful ending to her 5-year surgical journey…

Sadly, she ended up near death, septic in the ICU, and has undergone *seven* major operations now in just this year alone. Countless procedures, ER trips, follow ups and intensive home / feeding tube / abdominal catheter home care…

Later in the spring, our beloved family dog, Archie, suddenly developed a very similar kidney disease - which turned out to be caused by Lyme Disease. Despite spending over ten thousand dollars at Tufts Animal Hospital, and every ounce of energy and faith we had… Archie did not survive.

Our hearts shattered.

Our faith was broken.

Later in the summer, some of our children had to cope with another parent undergoing brain surgery. We supported them throughout the start of a new school year as best we could, but Jill, (12 years old with Down syndrome) has not coped well AT ALL with the sudden death of her school aide, her dog, and all of this medical trauma all at once… How could she, really? But everything that she is going through has been taking up a tremendous amount of our recent focus, time, and finances too.

Now here we are, in the fall.

Since the start of November alone… we have managed one child with a sprained ankle, another with a fractured ankle, Covid in two children, pneumonia in me and others, meetings with a dozen attorneys, multiple ER trips with catheter access infection, kidney stones and complications, technical highschool shop visits and applications, a complex name change and RMV application, along with the constant coordination of Hope’s care and planning of multiple more upcoming surgeries for her…

I’m not even sure how all of that physically fit into a couple of weeks.

But when our 14 year old son Rawson developed a slight headache over the weekend, it was naturally the least of our worries. We assumed he was coming down with Covid or any other fall school bug.

On Monday, he was still testing negative at home, but had developed a fever and worsening headache, so we started toward Urgent Care (for the sixth time in three weeks). But as he walked to the car, his pain escalated. He hit 103.7. He couldn’t move his neck. And told me he suddenly couldn’t feel his legs.

We changed course for UMass Emergency Room.

On Tuesday, Rawson underwent a lumbar puncture - was diagnosed with Lyme disease - and admitted.

By Wednesday evening, he was transferred to the ICU, with 104.2 fever, BP 70/30, O2 in the 80s, emesis, tachycardia, and extreme uncontrolled pain.

Thursday, yesterday, he developed absolutely frightening delirium.

Today, Rawson’s father (my ex-husband) is sitting beside me, running out of paid time off from work. My husband is at home with Hope and all other siblings, doing the same.

Nothing is working. Rawson is on every medication possible. Nothing is touching his fever or confusion. We don’t know what else to do or how long this will go on or what will happen.

We have no idea how to afford bills and Christmas, for these seven kids that deserve so much more than this…

We frankly have no idea how to continue to survive this.

Any support is just incredibly appreciated.