Saturday night Project : Project hosted our first of 6 monthly live music fund raising events at JJ Muggs Stadium Grill in Jupiter, FL. The night was a great start to what has quickly become another very important mission for Hope From Harrison. To support Bridgette Ludden and baby Stella as they are facing the reality of Stella’s diagnosis.
Today I’d like to introduce you to Stella and share with you what Hope From Harrison has committed to doing over the next six months to help. But first I’d like to share a couple things that came up last night that I noticed Bridgette is facing that Melissa and I both dealt with during our journey with Harrison.
The Ability To Receive
The first of which is how incredibly hard it can be to receive and impossible it can be to ask for help. In speaking with Bridgette last night this topic came up and I told her one of the hardest things for me to do when we were caring for Harrison was opening the door and accepting the Lasagna. Melissa and I had always provided for ourselves and to suddenly be forced into a situation where it is necessary to accept help is not an easy thing to do. There are a lot of confusing feelings that come with that situation.
So as we work to help families via Hope From Harrison Melissa and we do our best to be conscious of how hard it is to receive and make it as easy as possible. Sometimes just talking about it and sharing our experience is where we are doing the most good. If we can help a family receive without guilt and negative emotions then I believe that is as helpful as anything.
Time Is All There Is
The second thing that dawned on me this morning as I was reflecting on what I learned about Bridgette and Stella is how important it is that they have the opportunity to spend as much time as possible together. A month or so into Harrison’s life we came to the realization that we were going to outlive him. Once this became clear we stopped everything and found a way to be with him as much as possible.
We decided there was nothing more important that giving Harrison 100% of our love and attention. Fortunately for us our family and community stood up for us and made that possible. Which in return is the birth of Hope FROM Harrison. The outpouring of love and compassion we experienced had to be paid forward.
So as Melissa and I were talking about Bridgette and Stella this morning I mentioned that we need to step up in a big way so they get to spend as much time as possible together. There is nothing more precious than time and they absolutely deserve to spend it together. Bridgette is currently working full time to support herself and Stella and we would love the opportunity to provide them more time together.
At the time of this post neither Melissa nor I have spoken to Bridgette about this, but I wanted to share it here so when you learn about Stella Rose please consider how you can help support so that they get to spend as much time together as possible.
The following is a brief introduction to Stella that Bridgette put together. As we march forward with this mission we will bring as much information about Stella and Bridgette as possible.
Our beautiful 2-and-a-half-year-old Stella was diagnosed with a rare metabolic disease called Niemann-Pick type C, also known as childhood Alzheimer’s.
She is rapidly losing skills, including her catch phrase, “thank you”, which I will never forget how her little voice sounded when she said it, for EVERYTHING, even after I changed her diaper! She will never walk, has lost the ability to sit on her own, and now has a feeding tube to eat, but she ALWAYS finds a way to have a smile on her face, a sweet laugh for a tickle on her neck, and she still says, “Mom”, and kisses me on the cheek.
We are currently seeking financial assistance, since her insurance doesn’t cover her formula, which costs about $184 a week. She has therapies Mondays, Tuesdays, and Thursdays, but recently had to cancel Thursday’s, due to missing too much work.
Stella is the sweetest little person, and it’s my life’s biggest heartache that this world cannot keep her.
Our Goal for Bridgette & Stella
Melissa and I have decided that over the next six months of our fund raising activities we would like to raise a minimum of $10,000 for Bridgette and Stella. I know we can reach this goal and much more with your help.
We have established a unique donation link (see below) for baby Stella. 100% of the donations received via this link will go directly to help Bridgette and Stella.
If you prefer to write a check you can send a check to:
Hope From Harrison
PO Box 8861
Jupiter, FL 33468
*Please write Stella in the memo line of the check.
From the entire Hope From Harrison team we say thank you for the love and compassion that you are projecting towards Bridgette and Stella.
Lots of Love!
Donation Link To Support Stella Rose:
To make a secure donation to support Stella Rose please click the link below. All donations are 100% tax deductible and you will be provided an official tax deductible receipt for your donation. Thank You!