Merry Christmas To All

We wish everyone a Merry Christmas.  We appreciate all of your support and love through our journey.  We know there are so many who are hurting this holiday season due to loss and challenges and we BELIEVE in the reason for the season and that our efforts to bring about more awareness, education and funding for SIOD will continue to grow and be stronger than ever.

Believe-
The Koesters Family

Believe It Can Be Done!

Today is GIVINGTUESDAY and we are working with SHAREOmaha.  We have a wish list link where you could help us with our behind the scenes needs or you could also click to donate.  Please share our foundation site as well.  While you are at it, share how you know us on your own social media pages or with your friends and why LGF and Emily are important to you.  Please go to our website to read about the research where your giving dollars are going and read about our story.  Emily is the ONLY LIVING child in Gretna, in Nebraska, in the MIDWEST with SIOD! I believe together we can do something extraordinary!
SHAREOmaha LINK
LGF Website LINK

Yesterday we had a follow up appointment with Emily's doctor we lovingly call Dr. Elmo, but his real name is Dr. David Finken. He would be the last to say, if he would say at all, that he deserves any credit for Emily's success with her #SIOD disease, however; we think he is a tremendous asset to our team and has been through it all from the beginning with our little giant warrior princess!  We are proud of how Emily has been working on getting back to her baseline routines.  She is not there yet, but she is making progress.  Her episodes are few and farther between and that is good. 

We Take the Good, We Take the Bad...

This past week has been so full of emotions.  I hardly know where to begin.  As I shared on last week's blog we lost a dear transplant friend, Emerson Nicole White at the age of 13.  While this has been heart wrenching in and of itself, then a few days later we learned of the passing of another SIOD child, Leart at the age of 7.  Leart was diagnosed in October of 2014 at the age of 3.9 years and and this October had a kidney transplant from his momma, but it rejected only 12 hours later and on November 21st he got his angel wings.

I become friends with these families, first they find us or are put in touch with us by way of the Little Giants Foundation and we share experiences, I answer questions and work to guide them on this SIOD journey as best as I can and each child is so important to me.  We have done so much as a foundation and because of donors and supporters we have been able to send a lot of money to SIOD research funding, but at times like these it doesn't seem to be enough.  It is deflating, yet empowering. Empowering because I know how desperately we need more steady donations to come in to help fund the life saving research happening at Stanford.

Please consider us this Giving Tuesday- Dec 3rd and during our affiliates Matching Funds Program Dec 1, 2019-Jan 6, 2020!  Click DONATE at this site or on our website and if your heart is lead to, click the monthly drop down menu option.  Every dollar matters!

We want to thank the DO GOOD RUNNER group for putting on a charity run at Zipline Brewing Company in Omaha this past Sunday for Little Giants!  It was a beautiful day for a 5K!

The girls and grandmas and I delivered our -what has become an annual tradition the past several years- "Emily's Comfy Pillows" to children battling an illness. We have given these pillows to Children's Hospital in Omaha, UNMC Pediatric Unit, AI du Pont Children's Hospital in Delaware, and now to Angels Among Us- our non profit friends who help financially for children going through cancer treatments and their families.  All of these places have helped us and we are happy to be able to spread the comfort and joy.

The story behind the pillows:  While a patient in PICU back in 2009 (and many times before and since) , Emily’s grandma Shari and her aunt Marsha made pillows to help support her on her side and to cushion her. 

We offer Emily’s Comfy Pillows for the family member to use while they are healing as our way to pay it forward and let them know they are not alone in this fight. Emily has been at UNMC and Children’s in Nebraska, in Delaware at Alfred I duPont Hospital for Children and Stanford Lucile Packard Children’s Hospital. We invite the family to use Emily’s Comfy Pillows for their ailing family member or pass them along to help another child during their stay in or out of the hospital.

 Angels Among Us

 
Leart at age 3.9

A Tribute for a Treasure

I'm not quite sure when our first official greeting was, nor am I sure it even matters as once we began talking an instant bond and friendship was formed.
I remember walking by, on those rare occasions I left her side, and seeing this precious little one with the dark, coal thick hair and the tubes and wires from her body and then seeing her mother in the same chair I sat in catty corner down the hall.  Her mother had the same beautiful hair and the same look over her child as I did.
I had heard a few things of their story here and there and wanted to connect for some reason.  I'm not sure why really because back then I was real guarded of making new friends while our girl lay in a fragile state.  One day the opportunity presented itself as we were seldom out of our rooms and especially not at the same time.  On the PICU floor especially you are isolated for health reasons, yet isolated from what feels like the world at time in your room for another.
When we met I do remember how we both had wanted to hear one another's stories as we had both heard about our children and their chronic illnesses that were baffling doctors.
Over the weeks, the months, and soon what became years, this mother and I shared many moments together.  From happy milestones and small wins for our baby girls fighting their battles to the fears, depths of pain, struggles with "living" in the hospital, to adjustments at home, with friends and family.  We had many late night talks about having chronically ill children and what that carries with it.  We had those hard talks of what to do when, wha to do if and how to do this or that.
Our girls, although having different transplants, different reasons for them and different chronic needs, what was similar was how the two very sick little girls stayed resilient and have been teaching the world- quite literally-about very rare medical issues, paving the way in the medical world and capturing the hearts of so many and so many we may never even know.
Not only did that mom and I become friends, our whole families did.  We'd keep lightly in touch between hospital visits and keep up with one another's posts, get together outside of the hospital when we could ( depending on who had what "bug" at the time).  We celebrated birthdays as we treasured each passing year.
Time was not always good to us, yet we made it work for our chronically ill worlds.  I felt like we had quite the dynamic duo forces amidst us: Emi and Eme (Emily and Emerson) and Erika and Erin- The resilient warrior princesses and their advocate warrior moms.  Two different causes, two different rooms, two kinds of illnesses, two unique stories, yet our missions the same: to teach through our children, to love them to the fullest and to provide the best quality of lives for our daughters.
And now- within what seems like a blink of an eye- one of our late night talks has become reality.
Emerson Nicole White died November 15th at the tender age of 13.
I felt honored to talk to Erika that night as she shared with me of what finally occurred and now as I weep and wrestle with her loss my heart aches for Erika and her boys as their hearts are shattered into pieces that may never be repaired.
I feel as most must in this situation, compelled to do something yet knowing nothing I or anyone else could do can ease their pain.  I realize it is for selfish reasons I feel the need to help as it may bring me some comfort to feel as though I am doing something. I know despite the emotions I am feeling now they can never be enough to help our dear friends we met over a decade ago in this chronically ill world where transplants unite us forever.
There are a group of mommas and their families we met all around the same time and have remained friends and share our own stories together for another time, yet I treasure each one dearly.
If you haven't heard in years past of our friend Emerson, please go to her Hope for Emerson page and see her story.  It is not only remarkable, it is rare and she is beautiful- a life size porcelain doll we will treasure in our hearts forever.
https://hopeforemerson.com/

 One of my favorite photos of Emerson and her momma at the beach, which is one of their happy places.

The dynamic duo OUT of the hospital.  Emily doesn't know yet as in her fragile state right now Joe and I feel this would be too much for her to bear right now.

Brighter Days Before Us

Things are beginning to get brighter.  Emily is not magically cured, or better, or anything, however every day we believe and every day is a new day to be better than the day before.

Last week Emily had reinstatement evaluations for some therapies and they went well and there is a game plan ahead.  I've always felt it is important to keep her moving and as active as possible because like anyone when we are in motion to whatever capacity we are capable we simply do better in our daily lives.  Quality of life is top priority.

Emily's aquatherapy is improving as well as far as her getting more comfortable in the water again.  For those that don't know- she is a fish in water and her not wanting to go under the water is counterintuitive to her nature.  Baby steps.

Emily has another evaluation for her episodes tomorrow and as far as the foundation lots of cool things are happening!  Stay tuned for more on that as I am able to reveal!

Believe

Falling into our new routines

Although each day is a roller coaster ride, it turned out to be a descent Halloween!  Emily had a home school visit, followed by some aqua therapy and LOOK- she got in the pool today- not under water or in the deep end like usual, but she got in! Then on the way home- thankfully close to home- she had an episode so we hung out in the mom van awhile when we pulled in the lane. She then decided to NOT go Trick or Treating and then last minute decided to go! We had "escape plans"- grandma's- a friends house- and the mom van. She had a good time out with her sissy, Joe and I! We went before it got dark to help her mindset. 

Emily is truly such a source of inspiration! The other day she had an episode coming on when we arrived at her aquatherapy session. She used her breathing and focused on some techniques and with some coaxing to go in we made it to the pool where between her therapist and I managed to get her to sit on the steps in the therapy pool and by the end she was feeling stronger. Then we were off to gather some much needed groceries. Her face when trying to figure out which steak she wanted is priceless! Keep powering through our brave, resilient, warrior princess!


Not sure how to take it when the neurologist residents, fellows and attendings are excited to see the #SIOD girl and study her brain some more.
Joe and I are all about helping others and if this can help not only other #SIOD children and children with epilepsy then by all means study away!
Yesterday’s appointment brought up some interesting questions, observations and slight adjustments.
We continue to sit back in amazement at our warrior princess!

Every day Emily keeps pressing on. Here she is working in two different therapies ( one for continued neck/arm pain) and the other to slowly get her comfy back in the saddle again! 

  

 

Another Challenge to Face

Anxiety.  It can cause severe impairment, distress and mess with your mind.  It can interfere with one's academia, social and family activities.  It can be a challenge that many have, yet few are aware of or know how to react, behave or help the person who is having "episodes".

Emily has dealt with many challenges head to toe living with SIOD, however; this "anxiety" is new for her, for us and how to help her best.  Since this most recent hospitalization she had to deal with seizures and then her body said- hey, you've taken on so much, yet let's add anxiety to the mix.  Emily is getting frozen in fear of what will happen next, who will be able to help her like we do and how to manage life outside our home.  It is excruciating to watch as her parents, and plain old not fun.  We have been working through it with her and using some techniques, but we are finally at the point where she needs more tools in her kit and getting professional help.

It is so weird all of the emotions that come up.  We have dealt with a kidney transplant, cancer twice, debilitating seizures, double hip reconstruction, serious fungal infections, and 55 surgeries, and this Little Giant has conquered them all, however; this new challenge is throwing us all for a loop.  She will conquer this, too- we know it.  She has so many people helping her and loving her and praying for her and we are very appreciative.  For now we keep loving her, helping her and holding her close to help her believe in herself once again.

We appreciate all of our friends who have come forward to share their anxiety stories and to comfort Emily in that she is not alone and those who have offered some guidance.  We hope that if you are someone reading this and you have anxiety that you have tools to work through it as well and if not we hope this encourages you that you are not alone and to seek help as well.

Pictured with our resilient, warrior princess is our friend and her massage therapist for over a decade- Kim Kelly.  Emily saw her Sunday to help with her aches and pains and some brain work to help ease her body of being in constant fight mode.

BELIEVE

I kept searching...

I kept searching and reading and questioning what was happening over twelve years ago when our daughter, Emily first started presenting clinical signs of an unforeseen genetic diagnosis of SIOD.  Emily's kidneys were failing at a rapid pace despite typical drug protocol precautions and before we knew it she was getting a kidney transplant from her dad.  We thought- whew- okay now we can breath again- nope- she got PTLD (post transplant lymphoproliferative disorder- cancer) and it developed into Stage 3 Lymphoma.  Then as we thought she had it beat- not 3 months later it came back.  During this time I dove into everything I could get my hands on and talked to every doctor I could about WHY and what might be the underlying factor.  Finally we got an answer through more blood work, skeletal scans and testings.
I was an English teacher and literary criticism was my forte' and so researching came pretty second nature to me and it was a part of this prognosis I felt I could control.  I still rely on this tactic to keep me sane.  It has served me well over time and even though I am no longer dissecting what Shakespeare, Virginia Wolf, or Thoreau meant in a certain passage, I am figuring out what SIOD is and directly in contact with the researchers that are working hard to come up with a way to prolong our otherwise life limiting children's lives.
Did you know that research actually began with Dr. Boerkoel in Canada and our initial efforts began there.  Unbeknownst to me at the time, a Dr. D Lewis was traveling to this lab and knew about our Emily in the lab.  Why is this important?  Because fast forward to 2017 when the Canadian lab had shut down, Dr Lewis at Stanford took what could be salvaged from Canada and went to work in California.  This is important full circle stuff here.  It meant we didn't have to give up hope, it meant we didn't have to find, beg and borrow for someone else to help us find a way to help not only Emily, but other children as well.  It means that funding and grants we otherwise couldn't get are now possible that the research is in the USA.  It means we really didn't have to skip a beat in our efforts to educate, raise awareness and funding for SIOD!
As Emily works on recovering from yet another hospitalization, another complication, another stressor on her warrior body because of SIOD we ask you to take a look at our website link below and see how this quest fits into your world and what you might be able to do to help.  Please continue to follow and share and give from the heart.
https://thelittlegiantsfoundation.org/

Believe-

When you think you've got it

This past week has remained interesting to say the least.  Our little giant had her every 21 day intravenous immunoglobulin therapy known as IVIG and labs, her younger sister had her 3rd grade music program, some good friends got married and our Little Giants Board celebrated the successes of our recent Little Giants Annual Farm Run.

Throughout all of these activities besides the IVIG Emily has remained at home and fearful of daily activities, routines and going to school.  I'm not going to be able to explain it all here as I really don't even have a true grasp on it yet myself, yet I know that just when we thought we might have figured it out and Emily might be turning a corner we thought wrong.

Monday Emily had a really bad episode and today it was a challenge even to get her convinced it was okay to go to the hospital to get her renal ultrasound and dexa scans in preparation for her child developmental clinic next week.   Her head still hurts from yesterday's episodes, she's still dizzy and noise and light sensitive. Every day and parts of every day are different and have their own challenges, yet the goal remains the same: to help Emily live her best quality of life and right now that goal needs much tender loving care and work.

 

What Happens Next

Every day Emily keeps improving.  Every day brings its own set of challenges, however; we keep counting on our blessings as they will always outweigh the other.  We had Emily's follow up since discharge with her primary doc- Dr. Finken on Monday and we just adore him!  His calm voice and sincere love for Emily as we have all been through so much over the past 12 years is so reassuring.
One of Emily's biggest battles since this recent hospitalization is within herself and the stress she carries within her heart of what might happen next. 
Emily has always been acutely aware and so wise beyond her years throughout this disease.  This has served her in so many ways, yet now it is causing her to be fearful of what lies ahead.  She knows that she has battled so many times and won, yet she also knows how hard the battles are to recover from.  
It is always difficult for us as parents to see our children suffer for any reason and it is extremely difficult to watch over and over and over again.  I am one of the more positive people that I know and I also have a lot of strategies and disciplines in place that I come to daily to rise above each day.  And with the help of family we are working to help Emily with coping strategies to feel less fearful and safe for whatever happens next, whenever it may or may not happen.  

Here is some more good from our partnership with Stanford:

“In addition to determining the length of telomeres in the blood cells of SIOD patients, the Lewis lab is determining if two important factors in maintaining telomere length – the enzyme telomerase and hexanucleotide telomere RNA  - are reduced in SIOD patients.” – Dr. David Lewis

We are thankful to all of our donors and supporters on behalf of our Emily and #SIOD research.  

We are blessed!

https://thelittlegiantsfoundation.org/

When in an emergency...

 I have carried around different emergency information for years on Emily in the event of...and just a couple of years ago one of our hospitals that we frequent came out with an “emergency information form” for children with special health-care needs that essentially touched on everything I carried with me for years, but it’s done for you and it’s proven  very helpful when visiting all the different specialists and doctors and in different emergency or crisis situations.
 I thought this could be helpful for other people and not only for your children but for yourselves, for your family members-whether they have special health-care needs or not.  It’s a good practice because you never know what situations might arise in your lives and also it is a conversation to start to have with your family so in the event of an emergency or a crisis situation everyone knows the game plan. (With the holiday season approaching  this can be a great time at family gatherings to make sure all these things are in place)
 Here are my top tips:
1: ask your hospital if they have an emergency information form to plug your information into!
(Info such as: name- date of birth -primary language -male or female -your home address -parent or guardian and your primary care team and phone numbers -closest emergency room and hospital -any allergies medical or otherwise- any medications that you take -any diagnosis or baseline physical exams -And finally any emergency management things like problems or treatment considerations and dates - Be sure to have signatures on the forms!)
This is something you can easily type up for yourselves to carry with you but it is nice to have it documented for you or a loved one’s care management plan in your medical records.
2: have that conversation about being a donor for eye, tissue, and organs & also what to do in event of an emergency.
3:Know your Blood Type ( Again your primary care team can most likely provide this for you or if you are a regular donor you may already know what your type is our friends over at NCBB in Nebraska can easily help you figure out what your blood type is)
 All of these may be challenging and difficult conversations to have with families, however; it’s a lot easier to do so in a non-crisis situation than it is to do at that point and hopefully you won’t have to use it, but it is something that you can carry with you.
4: my last step is to make multiple copies in a bright color and keep it on your person either laminated or in a ziplock with your child, at their school, at the facility and anyone else that might care for them so everyone has the same information.
Again  this has proven  to be helpful countless times for us as a family and so much easier to hand over in any situation rather  than having to come up with or remember all of this on your own.

Best Laid Plans...

I had originally meant to update this post today with all things great and successful about our 6th Annual LIttle Giants Farm Run.  The event was a GIANT success, however; these days to follow have been rough. 
Emily had a planned PICU inpatient stay at UNMC to monitor some things for several days and although we were looking for some answers, we had hoped this wouldn't happen, but this is why we are here, in a safe environment should anything happen as it did today.
Emily had a grand mal seizure today and has lots of little activity since yesterday.  My heart sank and a ton of emotions welled up as I held her hand and watched and talked her though it along with a team. 
Fortunately, so far this time she came back to us quicker than the debilitating ones like this in 2015.  I promised her she'd be out by Homecoming Friday night before this today and hope now we can get her in a safe place.  She is afraid to go to sleep and didn't know and doesn't know when they happen, but wanted to know.
She is saying some things that are off, and fighting sleep, but in a good place right now.
Now to figure out these two types she is having and what else to do for her once she stays stable.
We are thankful for the familiar faces and the new we get to see here and even though how I had arranged the week for our family while here, that all changed today and we will take it one step at a time as we always do and BELIEVE!
A very sleep deprived Mommy Erin right now-
Tomorrow is a new day!
EK

 

It's EVENT week!

Mostly what is on our brains and hearts is the upcoming LGF Farm Run this Sunday, Sept 22nd!
IN the mean time we still have doctor appointments, treatments, therapies and school to attend as well.
Had Emily's kidney follow up appointment on Monday. The good news it that the medicine to keep her protein spilling from increasing seems to be doing it's job.  So the question is then why is she spilling protein from her daddy's 11 year old transplanted kidney?  The kidney is older and it could be beginning signs or it could be reflux of function or more unlikely, yet who knows with Emily and #SIOD, it could be the FSGS presenting again.  So we continue to monitor with labs and urine cultures throughout the year. 
As usual, Emily needs to DRINK MORE WATER!  Those following us awhile know this is a challenge for Emily and she gets fluids at night via her G-Button to supplement, yet she still needs to drink more.
Tomorrow Emily has her every 21 day infusion for IVIG followed by her quarterly pamidronate infusion.  It will be a long day for her. 
We are super excited for our Farm Run though and we are so thankful to our many sponsors, volunteers and registered runners and walkers!  You all are making a difference for SIOD research!
Here is the link as there is still time to sign up!   https://buff.ly/2JwEWxW

 

September Super Start

September is really off to a super start all things considered!
Let's start with the super: Emily was surprised with her Sweet 16 birthday gift from our dear friends Renee and Reese Jaeger with a girls night to see Thomas Rhett, Dustin Lynch, Russell Dickerson, and Rhett Akins in concert!  That same weekend, ironically was the opportunity for Taylor-Jo go to her sister's camp and experience the COHOLO life! (this is the cancer camp Emily attends each July and in September it is open for the SIBLINGS!)

Emily has been to a few docs and restarting Aquatherapy in addition to her horse therapy with HETRA.  We saw the ortho for her ankle lumps and the jury is still out on these even with xrays and ultrasounds we have ruled out what they are not at least.  Today she saw our sleep medicine doc and will try a few tweaks in succession to help with her energy level and leg restlessness at night.

We have our 6th Annual LGF Farm Run coming up quick!  Here's the registration link again! And this year we are adding a cornhole tournament! YEE HAW!

Farm Run Reg Link

 

Abundantly Thankful

Yesterday was probably one of our top 10 days this year!  We had a fabulous family day and much needed retreat with nature before revving up again this month with all the things school, doctors and fundraising!
Here are some pictures of our day that started at a local Sunflower Farm, Emily purchasing her own guitar with some of her birthday money, picking produce from our fruit trees and enjoying our gorgeous Nebraska sunset!

 

Hello September!

Activities: Drive2Ride

Often times I get the question- even from her doctors- as to what I think is the reason Emily has made it to 16 years old despite the odds stacked against her. One of my answers remains the same because I feel it is a combination of things, but a top two answer is her activities!  She is in some sort of therapy at all times, sometimes multiple therapies and we have worked to find a good amount of time to be spent on her quality of life activities and getting enough rest as to not land her in the hospital.

Horse therapy has been one of those activities that we have prioritized for her every week for the past 3.5 years ( except for the other medical necessities that arise or unbearable weather).
Emily loves to ride her horse Rainbow and you can read more and decide if you'd like to contribute to her team this year to help her and her friends she has met through HETRA to keep riding because insurance does not cover this type of therapy yet.

Here is Emily's link: Team EMILYK
https://www.classy.org/team/246678

Feel free to share as well!

Celebrate Good Times- Come On!

                         We celebrated 1 year as a founding board (3 not present) and 5 years as a non-profit!

A saying comes to mind that reminds me of both our Emily - the voice and face for over 12 years with #SIOD- and our Foundation- "Though she be but little, She is Fierce!" Shakespeare

Thank you to every single person we have ever encountered and have the privilege to know through this journey.  Without each one of you we could not have some this far!  More celebrations for you our "BELIEVER" friends and let's also celebrate another year Emily gets to go to school!  Enjoy our  FIRST DAY BACK photos!

                                                

Gearing up to go Back2School!

One of the questions I get most often as Emily's mom is: Is Emily able to attend school?

The quick answer is, yes. The more important detailed answer is yes,

on a modified schedule. Emily did NOT attend preschool due to #SIOD.

She attended only her 1st day of Kindergarten due to SIOD.

She was taught at home and in the hospital for several years

after and on extended hospital stays due to her SIOD.

This is part of living with a rare genetic life limiting disease

or any chronic kind of illness. Emily only attends school 3 days

a week for 3-4 hours on those days. This seems to be her best

quality of life school zone. Gretna Public Schools has been amazing through it all! 🙌

She takes many medications that we give before she goes, she requires more sleep,

more cognitive rest and has doc and therapy appointments mostly

on the other 2 days. Not to mention risks of infection! Is this schedule

for ALL SIOD kiddos? No. Honestly many of the SIOD children either

don't live long enough or aren't old enough yet. Another reason why

your donations matter. Another reason we must keep raising funding

to help prolong these children's lives so they too may attend school in

whatever way that looks for them and their medical necessities. 

We managed to sneak in quite a bit of last minute summer fun this past week

before school begins for us on Thursday. Our friends, Neely and her human

Shannon came by during Emily's IVIG infusion to help distract and comfort.

We played at a friends pool, got back to school hair do's, went to the doctors

and therapies and enjoyed some time at the Children's Museum.

We hope our readers have enjoyed their summer as much if not more

than we have and remember to stay safe, have fun and wash those hands!

                                 

                                                

CAUGHT UP IN THE COUNTRY!

What do you do when your Little Giant turns SWEET 16 and she wants to see in concert and meet one of her favorite country artists, Rodney Atkins!  Why you grab tickets to your local county fair and go of course!  And with a little finagling you get meet & greet tickets for an extra surprise!

                               

All Things Camp & A Race to Run!

What's less than 10 miles from our home?  Allows kids who have or have had cancer or blood disorders a chance to be kids and provides hours of unending fun?  Why Camp COHOLO of course.  A camp that fosters COURAGE HOPE & LOVE and provided a safe refuge for Emily for what I can best recollect as these past 9 years!

 

 

 

Looking for a family fun adventure that helps others?  Look no further!  Run ,walk or skip and help raise funding and awareness for #SIOD!  Be sure to register for our 6th Annual Family Farm Run here today:
Farm Run Registration

Also- did you see this article on blood donation?
Life Saving Blood

Saving Lives, Sweet 16 and Summer

June 29th we held our 2nd Annual Blood Drive in Honor of Emily's birthday and had 15 new donors and 17 walk ups that day and a few more!  Over 30 pints and over 30 lives saved and donated to our local hospitals.  We love our partnership with Nebraska Community Blood Bank (NCBB).  

Emily turned SWEET 16 on July 8th!

 

Summer has been treating Emily well this year as she continues to maintain therapies, doctors and treatments.  We are so grateful for the good times for her with this disease.  We know it can be different any moment. We are in full swing for our next FUNdraiser happening September 22!  Keep a watch out and mark your calendars.