Butterfly Kisses- SarahLynn’s Recovery

Hello family, friends and all others to whom this may have reached out to. My name is Tony, I’m a father of 3 beautiful children. Any parent(s) out there know that we as parents will go through any extreme measure to help our child in need, no matter how difficult the challenges may be, or how much pain we will have to indoor for them. We will do it for them simply for the price of a smile on their faces or to receive a kiss on our cheek, a big bear hug or even another chance to hear them say Good morning, Good night and I love you. Than there’s the reality, that comes at a cost, when the world makes things hard to achieve when seeking aid.

Our 16 year old daughter, SarahLynn.

Is known to be a kind, gentle soul and motherly like to her younger brother.

At the age of 5 years old she had two seizure like episodes.

Once, while I was getting her ready for school. As I Combed her hair, I felt her body trembling and I glance up at the mirror to see her reflection and noticed her eyes begun to roll back and she seized up.

Second time, as we we’re bicycling home from the school bus and out of the blue she passed out, fell off the bicycle. I ran to get her out of the road way. She was pale face, her lips were blue, I can’t feel her breath or see her take a breath. A lady came running over after hearing me scream for help. And as she was patting SarahLynn on the face to try and wake her up. It somehow worked! SarahLynn was weak and confused and was only making slight movement by nodding her head. With her in my arms, I ran home. We got her to the E.R. Nothing came up on her.

We Scheduled lab work, had blood drawn a CT scan and there was nothing they could find wrong. It was a head scratcher for us all.

As years went on, she never had another episode. She had head aches here and there, and like most of us, we take head ache pills, rest and it’s gone. Or could of been one of those Princesses days of the month for her. Some of her head aches and cramps were more hurtful at times. But it eventually went away. We never look forward to another one of these days and gave up thinking about it.

Now after 11 years later. Things take another turn for us all. Especially for her.

The day after enjoying a fun filled Christmas weekend.

Everyone has gotten up and doing chores around the house beside SarahLynn. We figured she is still exhausted from the night before. As I was cleaning up the back yard, I heard SarahLynn call out to me.

Daddy…Daddy, can you put a chair in the tub so I can shower? I was surprise she snuck up on me, but I asked, Why, are you ok?

My head hurts she replied. and I feel dizzy.

I told her , ok let’s go get you one. As I was searching, I walked past her and glance at her while she was trying to make her way down the hall. I noticed her leaning on the wall dragging her shoulders against it as she walked down, I then grabbed hold of her and asked her if she was ok?

she said she became very dizzy and then her vision became very blurry. I got her to the restroom with her arm in my hand. It seems she was a bit odd to me, as if she was trying to make sense of what’s happening to herself. I asked her what’s going LynnLynn? I can still hear it clearly in my head, the frightful tone in her voice. Daddy I can’t see !!

what do you mean you can’t see LynnLynn, is your vision that blurry?

No! Daddy, I can’t see !!

I raised and wave my hand in front of her face to see if she would react or blink. With my hand still in front of her face, I gently tap’d the top of her eyebrow and she flinched. I started thinking, did she really Just lose her sight? I walked her back to my bed side and asked my other daughter for a flash light so I may pass it across her eyes to see if her pupil would react to the light. I really didn’t know what I was doing. But at that moment it seemed right. This whole time I think she thought she was staring straight at me but her eyes was glancing down. LynnLynn, look up for me? Look up at me? She raised her face. And right away I saw one eye almost center to her nose and the other is straight.

LynnLynn look at me, focus your eyes on me, just with your eyes.

shes moving her head to face the sound of my voice but her eyes are not following. For a moment I thought she saw me but then I leaned away from her view a bit and she didn’t seem to notice that she was looking past me not at me. As all this is happening so fast. As I turned to tell my wife something is wrong call 911. I can feel LynnLynn gripping my hands tighter. Our other daughter Lony yelled out O MY GOD DADDY, SHE’S HAVING A SEIZURE, SHE’S HAVING A SEIZURE!!!

at that exact moment I can feel LynnLynns body begin to treble harder and harder as she tries to hang on to my hand. I looked at her and he eyes rolled back while she started to blink and twitch, I leaned her back on my bedside as she was shaking, gasping and choking for air at the same time. I’m hoping she can hear me as I’m constantly telling her to hold on and to keep on breathing for me please. Keep fighting it baby. It’s going to pass. Just keep breathing for me. I love you sweetheart.

So much was said and going on at that moment, it was crazy. Moments you see only in movies where it comes to a part where the character doesn’t know what to do or to think under crazy pressure or always doing the wrong thing at the wrong time and your watching it yelling at the screen, REALLY?!

I never had a moment like that with my kids and/or for my kids if that makes sense. Where I drew a blank. I couldn’t even think of the simplest thing. Somehow trying to operate a cellphone became very difficult to use, simple as swiping up the screen or pushing In your code to unlock the phone.

Yes, very sad but very TRUE.

So ambulance took her to a medical hospital in Arlington, not long after arriving my wife called me and told me LynnLynn had another episode, this time it lasted longer and stronger and seem worst, she bit her tongue during this episode and bled a bit. After about an hour or so, they gave us 2 options, have us taken to Cooks children’s Hospital or another place I don’t remember the name of. We said We are new to the area Doc. Please help us, where would you recommend we go? He said Cooks children. They do pediatric care there and are very good with kids. We agreed, and off we went, and straight into ICU after we arrived.

We are scared, we didn’t know whats going on with our little girl. After what seems to be a life time of tests, they were narrowing down to something. Turns out

shes Positive for Covid, she has Pneumonia, high blood pressure of 210, a lot of blood in the brain that is putting pressure on her optics nerves. That’s what is obstructing her sight!

After waiting and and listening, they seem to talk more about her kidney function. While we wait for more results, I started doing my own researching and came across the 5 stages of kidney failure. What I read, I was almost sure there was no way my little girl could be at any of these stages. I prayed and prayed that I don’t hear it.

My wife and I usually do a quick swap outside of the hospital building while the car is still running. One will come down, jump in the car and go home to be with our other kids. We hardly had time to hold and comfort each other and as much as we both desperately needed each other’s shoulders to cry on there was no time. It was a quick kiss and I love you and off we went. We both felt we didn’t want to lose any moment with LynnLynn nor leave her feeling alone, so we did our best not to.

The one day came, I was ready to do our routine swap and I call for my wife and this time she told me, you need to park the car and come up stairs. I got to the room, there were doctors and nurses in here.

my wife had this teary look in her eyes and LynnLynn look as if she lost her bestest friend in the world. There were no good welcoming faces as I pardon my way thru the room, I stuff down, I asked what’s going on?

I was told, My daughter is diagnosed with C3 glomerulopathy. She will need to have a kidney transplant. Until then, she will need to begin her kidney dialysis soon. I’ve asked questions of how and what can help speed things along so our baby doesn’t suffer anymore then she is. So I suggested if my blood type is the same, take my kidney and give it to her, please.

Doc said it’s not that simple. But Yes, if you are a match and willing to, it can be done in due time.

I thought to myself, Willing to? ? I’m beyond willing to. I would give up my last breath at that very moment to heal my baby instantly with no hesitation.

We were approached with two dialyses treatment options to think about.

1.Hemo Dialysis (H.D.)

2. Peritoneal Dialysis (P.D.)

After some quick short days, consideration, talking, researching we agreed on going with P.D. Treatment for her. Not long after that my wife and I blood work came back, this would determine if we can be a big help. As soon as we have high hopes, it quickly descends when my wife and I found out our blood type are not a match for her.

Complement 3 glomerulopayhy (C3G) is a rare kidney disease that has two forms: dense deposit disease (DDD) and C3 glomerulonephritis (C3GN). Each is caused by genetic or acquired problems in controlling the body's complement system, which helps fight infections.

Our daughters kidneys is at a 10% function. Her lab test shows that her kidneys are severely damaged and there’s no chance of it recovery back to its normal health.

The one I fear the most when I read all stages, was

STAGE 5. The End-Stage.

That title itself sounds dark and terrifying.

SarahLynn is at the finale stage of kidney failure.

she has a type of autoimmune disease.

Our daughter went from having a beautiful Christmas to needing a kidney transplant.

After the horrific news, her and I stayed up til 1a.m. talking, praying, then somehow we ended the night smiling and laughing.

Since the day our first child was born, we never spent any birthdays or holidays away from each other. No matter where we were or went, we always planned to celebrate things together. Even when it should have only been my wife and I on dates. We bring them along.

This time, was the first time, for many reasons, we are pretty much forced to be some distancing.

Lony snuck in and paid a visit to her younger sister and spent the night as well. We tried to throw a New Year’s Eve Party in her room. We did some arts and craft that night and tried decorate the room so she may still feel the excitement of what the world outside is enjoying during the New Year’s Eve moment. What we would normally do if we were all home together.

I know the Goal amount sounds crazy. I’m not even expecting it to reach that high. But I don’t have to be a rocket science to know that we are already behind before this all started.

I’m embarrassed to say we have no health Insurance.

We have been denied for financial aid in Medicaid, Medicare, chip. We fear we are in a sunken ship due to the expense of medical bills and medical prescription refills. We are not ones to ask a lot or for any assistance. We are a kind of family that do our best to thrive and give back and help others in need. But I feel that now I know we may need to ask our friends and family.

Any open hearts are very welcome to help out with donation. Big or small, positives prayers and all. We don’t judge. We understand now a days times are tough. All those who came across this page, took the time to read. Thank you for listening. If anyone is, or know of one in the same state of health as our baby. Please let us know how y’all are doing and what works and what doesn’t with you and/or yours. We are so new at this. My wife and I are very interested in learning to get better so we may care better for our baby girl. What knowledge we gain can also pass along to help another that may be I. The same situation.

Thank you all.

God bless you all. Please keep loving each other to Jesus front door and all the way back.