Raising Funds for Rian - CDKL5

Hi Family & Friends!

June is CDKL5 Awareness Month and we are two months away from Rian turning 6 YEARS OLD!!

She has had some pretty scary times during those almost 6 years of her life and has endured things that you and I could never imagine going through. This child has been through SO MUCH. We have decided NOT to do a big IN PERSON fundraiser like last year and have decided to do an ONLINE FUNDRAISER THIS YEAR because of all the medical adjustments we have with her since being home, multiple follow ups and she is also going through some heavy duty medication weans.

This past winter was extremely rough for this little girl. From being sick all the time, having high fevers nonstop, to med changes and weans, extreme irritability, we could't figure out what was causing all of her distress. Her team decided it was time for her to come up and be admitted through the ER to have her worked up for everything. Things that she was doing at home, we thought were something completely different than what happened when we walked through those ER doors at Boston Children's Hospital.

They diagnosed Rian immediately with respiratory distress. She was desating into the low 50's and 60's, turning a scary color of blue, and ultimately hypoxic. Hypoxia can be LIFE THREATENING and at that point in the hospital Rian started passing out. It was causing her heart rate to drop but also cause her ventricular tachycardia to escalate as well. Within a few hours the team decided to put Rian in a medically induced coma where she was intubated and on life support for 10 DAYS. During this time she had 3 SPINAL TAPS and 2 BRAIN MRI'S, as well as a multitude of tests that had to be sent out to specialty labs. Rian also ended up having to have a BLOOD TRANSFUSION.

We met with many Specialists within Boston Childrens Hospital, as well as the team reaching out to other specialists throughout the US at other CDKL5 Center of Excellences in hopes of finding a way to possibly help treat our little Rian. From February 20 until April 2 we were in the Medical ICU and then spent a week in the Intermediate Care program wing and went home with NO ANSWERS. Rian had the best doctors in the nation stumped/ confused and left us with no answers. There is not one case like Rians and ones that are similar had better reactions to treatments. Rian reacted negatively or had no reaction to these treatments.

6 weeks our family went though hell and back. 6 weeks of wondering if Rian would go home with us. Days where we were so scared we were going to lose her. We had A LOT of moments where we cried, had discussions with Palliative care on what we were supposed to do IF we had to decide it was time to say goodbye and the necessary steps to take. We held her little hand hoping she knew we were right next to her.

Rian is now home and while she is on daily oxygen and some med changes and a different feeding tube situation, she is doing much better than she was this past winter. We are fortunate to have this little girl back in our arms.

With that said WE NEED YOUR HELP! We have been lucky enough to have some foundations help Rian, but it is just not enough to help cover the costs of what we had to go through for 6 weeks in Boston. We have also decided for Rians benefit, that we are keeping her home full time from school. Her health is of the utmost importance to us, so having her stay home is most beneficial for her!

Rian is homebound instruction so her team of therapists come into our home- but our home is not a school and we need all the school/therapy things that we can get to help Rian achieve all the things that we know she can do here in our home.

So please help us in Raising Funds for RIAN! Any little bit helps this little girl who touches the lives of everyone she meets!

You can donate here on our gofund me page OR You can purchase a Rally 4 Rian candle here: Rally 4 Rian Candle and join us for a short Benefit Walk for Rian on JUNE 15 at 11:30am. ( water and snacks will be provided- please message me for more details)

Part of your donations will be going to the International Foundation for CDKL5 Research in hopes for better treatments and therapies and hopefully one day to find a cure. We believe research matters!

If you would like to know more about CDKL5 please visit ALL ABOUT CDKL5