Mason’s Story

There doesn’t seem like enough words to express how thankful we are for everything you have done for our family.

21766656_297392380738444_5134201689792138809_nOur journey began at our 20 week ultrasound in January, 2017.  We learned our baby Mason had a rare congenital heart disease known as CCTGA, congenitally corrected transposition of the great arteries. The future for him looked so easy — as easy as heart disease comes. He was born perfectly healthy, with no signs of distress.

At about a month old, things began declining slowing. At 3 ½ months old Mason and our family traveled to Boston Children’s for his first open heart surgery. Thirty days later we returned back to Virginia to find he was in heart failure. After months of trying to control it, he showed no improvement. That was when we faced our only option — to list him for transplant. 

We felt so scared, but after asking our doctor to give him life and he led us here, we knew it had to be done.43539698_492767594534254_5497748148233175040_n

August 30, 2018 we went for Mason’s G-tube surgery. It was that admission we realized he was in complete heart block. About a week and a half after discharge we came back in due to issues with his G-tube. That’s when we realized that this was “the admission,” the one that kept us in until Mason got a new heart.

On October 21, 2018 Mason received the greatest gift of all, his perfect donor heart. During our admission my husband and I took shifts. I spent the week in the hospital with Mason, while my husband worked and cared for our two girls. The weekends he took hospital shifts while I spent needed time with our girls.

For those couple of months it felt so hectic and we all felt so spread apart.

It wasn’t until coming to The Alyssa House that our family felt whole again. The Alyssa House felt so warm and welcoming, and was the best recovery regimen our entire family needed.

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We have spent more time bonding and enjoying as a whole family than it feels like we ever had before.

It’s been a true blessing to have a place to call home through our post transplant care. It was an honor to stay here, to learn about Alyssa, and partake in the house lighting. The generosity of everyone with The Alyssa House is beyond words. We feel honored and blessed to make this house our home for a short while.

mason-haislipIt is with sincere gratitude and appreciate that we thank you. It’s hard to leave the place that gave me comfort during an anxious time, but I hope it helps the next family as much as us.

 

 

Sincerely,

Tiffany, Dustin, Mason, Arianna, and Aubrey Haislip

 

 

Helping Families…

IMG_0077.JPG“I just want to thank The Alyssa House for allowing my family to be together for such a scary time in our lives, for loving on us, and making sure all our needs were met. You took a huge weight off our shoulders.

“We came to UVA Children’s Hospital for an emergency dialysis surgery. We came fighting. We couldn’t see the end. Thank you to UVA doctors, nurses, and all staff for caring for my baby girl. You loved on us all and always encouraged us. You got my baby feeling so much better and I will always be grateful for that.

The Alyssa House will always hold a special place in our heart. We have been blessed to be able to stay at The Alyssa House. We got to stay here for free — all because people have given. “

A Message of Gratitude…

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I just want to thank The Alyssa House for allowing us to stay here in this wonderful home.

We started our journey back in 2014. Cody has been in heart failure with severe arthritis and vasculitis since he was 14… His whole teenage life was taken from him. Cody was blessed with another chance in life six days after being put on the heart transplant list.

We had a big set back and Cody was in the hospital longer than we expected. They had to reopen him back up 7 weeks ago.

Our 4 weeks here have been amazing. The healing has begun and he’s been doing great. We call this our home away from home and it’s been a blessing knowing he’s not too far away from the hospital…

We want to thank the Divers family, the church, and of course their sweet girl Lexie for bring Easter Bunnies. My grandbabies loved them

Our journey here is done. Now Cody gets to go home to graduate in June!

May the next family that comes here feel as welcome as we did! Thank you for sharing this home with our family!

 

Sincerely and always,

The Monto Family

A Thank You…

IMG_6620-edit.png“I can’t thank you all enough for what you’ve done for our family. Hearing the news that my daughter Layla would need a second heart transplant was terrifying.

“When we decided to come to the University of Virginia Children’s Hospital, it was very stressful trying to figure out where we would live and how we would get by being so far away from our family in Pennsylvania.

“You took away all that stress and worry by giving us a place to call home for four months. It has truly meant the world to us.

“Thank you for all your generosity and love. We were welcomed with open arms and I think that has made a huge impact on Layla’s recovery.

“Layla was born on March 30, 2007 with Hypoplastic Left Heart Syndrome. She had 1381522_543088572440447_413212140_nher first open heart surgery at 3 days old, her second at 6 months old, and then her first heart transplant a month after her 1st birthday.

“She battled countless complications in the years after her transplant. She had feeding issues, rejection, PTLD, absorption problems in her intestines, infections, and tumors. We thought she was finally in the clear in 2016. However, in April of 2017, she went into severe heart failure. The University of Virginia Children’s Hospital was willing to list her for a second risky heart transplant.

“In July, Layla was transferred and on September 21st, she received her second gift of life. She was discharged and we went to live at The Alyssa House.

“We will be forever grateful for the help and care we’ve been given. Thank you to the Divers Family, the volunteers, and the sponsors who have made The Alyssa House possible. You have made a big difference in our lives.”

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Working Together to Help Families in Need

IMG_0198The Alyssa House is proud to have joined several other Charlottesville nonprofits to meet the ever growing demand for lodging for families of patients at the University of Virginia Children’s Hospital.

Learn more about our work in the Housing Collaborative in the local press coverage from The Daily Progress and NBC29.

http://www.dailyprogress.com/news/local/housing-collaborative-helps-families-at-uva-children-s-hospital/article_3635b59c-35e6-11e8-9e1e-d37bf11aa690.html

http://www.nbc29.com/story/37837003/local-nonprofits-partner-to-house-uva-childrens-hospital-families

 

Volunteer Feature: Teen Miss Carrington Harris

We’re sending a big ‘Alyssa House Hug’ to volunteer Carrington Harris, the 2017 Dogwood Festival Teen Miss.

Throughout her reign as Teen Miss, Carrington provided Welcome Bags filled with toiletries, games, and goodies to every single child that stayed at The Alyssa House.

The Dogwood Festival is near and dear to our hearts, as our own Alyssa was named an Honorary Dogwood Festival Princess during her fight with osteosarcoma.

We met up with the 16-year-old Carrington to learn a little more about her inspiration to help children in medical crisis.

“I first met Alyssa when I was Preteen Miss Dogwood festival and Alyssa was the 75772_278848698900589_1760146796_nHonorary Princess. We did several events and Parades together.  We were the same age.

Spending half my time in and around Fluvanna County, there were always stories of Alyssa and her impact in the community. We all followed the family and were excited when The Alyssa House came to life.

Knowing and spending time with Alyssa and watching her battle with cancer, I knew the least I could do was to help other kids and their families as they battled for their child’s life.
 

The Carrington Project was created after my Grandfather Spanky Harris lost his battle with lung cancer in October 2013.  I knew then I wanted my platform to be in the fight against cancer.  Being so young my self and seeing kids and babies fight for their lives, I knew I wanted to concentrate on childhood Cancer and diseases.

I spent an evening with Lynn (Alyssa’s mom) talking about Alyssa, their journey as a family, and what was beneficial. After that I came up with the Welcome Bags.  I heard from a lot of families about how hard this fight is on the siblings of a treating child.  This is why I also make sure that all children in the family receive a bag personalized to what they like and their interests.

 

My message to the kids and families that come into the Alyssa House is to be brave, be strong, and keep up the fight!
 
We are here to love and support you… We are all in this together in the fight against cancer and childhood illnesses.”
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A Message From Alyssa’s Mommy: Sign-up to Volunteer!

What kind of Fairy are you?

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It takes a lot to make The Alyssa House possible…sometimes it almost seems like magic! At The Alyssa House, our volunteers are like fairies, quietly taking care of what needs to be done as a gift…. a little bit of love and magic. The Alyssa House is a place of respite, recharge and retreat. Thus, our fairies offer behind the scenes support for our fragile families. We are looking for “fairies” for four categories: Laundry, Feeding, House and Events.

 

TAH wants to have a working list of Fairies/Volunteers.  If you are interested, please email thealyssahouse@gmail.com with your willingness and which categories you are interested in. You can be a fairy for them all!

We are aiming for a team of roughly 15 on each team in order to have enough hands on deck when a specific need arises. All of them are very easy on the time commitment piece.

The details of the four categories thus far are:

Laundry Fairies – Come and grab laundry to wash and return when we reset the house for the next family. Thus far, twice in 6 months. Laundry consists of sheets, blankets, towels, etc. that belong to The Alyssa House (about 4 laundry bags). We anticipate needing 3 – 4 fairies for the team approach to a reset with each fairy responsible for one laundry bag. Fairies have flexibility over several days in which to do the laundry – just need to coordinate pick up and drop off.

Feeding Fairies – Help by baking a casserole or stocking our pantry with non-perishables for the families, as requested. Again, our two previous families availed themselves of this option only a handful of times, but a home cooked meal (even frozen in the freezer) is a gift to a tired family. For this, we only need one fairy at a time but we’d like to have a team upon which to call to be sure that someone is available and interested. IF the meal is to be delivered ready (instead of frozen) sometimes this call is more timely. Often fragile families don’t really know their hospital schedule as it can change dramatically. Some real flexibility to whip up something with a day’s notice is helpful. Also a quick trip to the grocery for basic, child-friendly non-perishables can be a Feeding Fairy duty!

House Fairies – Deep clean the house upon reset for a new family – and even some minor weeding or plant watering of the yard. Ideally we would like to have 4 – 8 volunteers for each reset. Again, time commitment is limited – just a few hours on one day – with a few days’ notice. Thus far, this has happened only twice in 6 months as well.

Event Fairies – Help us with awareness and fundraising activities. We are kicking around the idea of doing concessions at John Paul Jones Arena and/or the Sprint Pavilion for sporting events and concerts to help raise funds and awareness. We’ve not done this, yet, but we hear it can be fun for extroverts who enjoy getting to a game or event and socializing with other volunteers. (Know a local fraternity or sorority who wants to adopt a good cause?) We’ve also done events at several local stores, farms, churches, etc. Sometimes we need a team of a few people – up to 4, perhaps, who are willing to take a shift at an event, or work concessions together and share the story of The Alyssa House.

Other fairies – We have fairies who gather gift cards, items to make or give to the family, and those who offer their services – as a photographer or cosmetologist, for example, too. Lexie continues to gather new items: quilts, stuffed animals and other comfort to share with family members. She is well stocked at present.

We would really, really appreciate- to let me know if you are still able and interested – and if so, which “team(s)” suit you. We would also like to know if you are no longer available. We don’t want to pester you with emails if your time, heart and energy are elsewhere.

Thank you so much for supporting The Alyssa House with gifts of time and treasure – and especially of your heart.

With my gratitude,

Lynn, still Alyssa’s Mommy

PS. Isn’t this the cutest picture of Lexie? (shhhh!)

Fundraiser- “Paint for a Cause” at Muse Paint Bar!

Thank you to all our friends, family, and community members who came out to “Paint for a Cause” at Muse Paint Bar.

It warmed our hearts to see so many people from all over the community! We were joined by friendly faces from the dance community, Alyssa’s church, and more.

We had so much fun, we almost forgot it was a fundraiser! Your support helped us raise much needed funds to help us continue our dream of supporting families with children in medical crisis.

We were also touched by those who incorporated our special “Alyssa Blue” into their painting.

Thank you for walking with us on this journey. Your support means everything to us, and will help make a difference to a family in need.

 

 

Spring Event: Alyssa House Planting Day

Thank you to everyone who came out to our Spring Family Planting Day!

Our wonderful volunteers who braved the (unseasonable) hot  April weather to help us beautify The Alyssa House grounds! Their efforts made the Alyssa House more welcoming for future children and families.

Special thanks to Metcalf Tree & Landscape Services, Inc. for sponsoring the event! We couldn’t have done it without you. Thank You to Moose’s by the Creek and Great Harvest Charlottesville for providing delicious food to feed our hard working volunteers!

 

Thank You for Your Support!

One of the gifts Alyssa left us was the gift of community. 

img_6015Thank you to all the members of our community who came out to support The Alyssa House at Kendra Scott as part of their Kendra Scott Gives Back event! It was wonderful to see so many familiar faces who have walked with us on this journey, as well as new ones just learning about our mission!

We have been pleased to receive so much enthusiasm and community support as we continue our dream to ease the burden on families of children in medical crisis.

A special ‘Thank You!’ to Kendra Scott to partnering with The Alyssa House!