Addie's Treatment Fund

$81,158 of $15,000 goal

Raised by 690 people in 29 months
Brian DePersiis
on behalf of Brian DePersiis
 HOBOKEN, NJ
Our friend and colleague Brian DePersiis and his wife Vanessa are about to start treatment for their 5 month old daughter Addie on her recently diagnosed cancer.

Our goal as a part of Brian and Vanessa's extended family is to help reduce any outside distractions so they can focus on the treatment journey and optimize the outcome for Addie.


 We know that not all the expenses as part of Addie's treatment are going to be covered by insurance. These expenses include transportation costs to and from Addie's treatments, local housing near treatment centers, paying for transportation and lodging for family members, meals and extra support for Addie, Brian and Vanessa. This campaign will help to fund those expenses.

Treatment for Addie is scheduled to begin in the next week. Our hope is to reach the goal before the end of January.

We want to thank you all in advance for your kindness and generosity. Together as a family we will help Brian, Vanessa and most importantly Addie.  It takes a village to get through this process and we will be there every step of the way with them.
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Two words - CLEAN SCANS!!! This past Wednesday, Addie had her two-year post diagnosis brain and spine scans and they showed that she continues to be NED (no evidence of disease). This was a huge milestone for us as the current limited data available implies that the chance of recurrence significantly decreases after this point. We are extremely proud of how strong she has been and grateful for her team of doctors, nurses and therapists in getting her to this point. We will be stopping one of her oral chemo meds in two weeks and continuing with the clinical trial drug (DFMO) until September of this year. Addie has done really well tolerating her hearing aid over these last few weeks and has been talking so much more - it has been wonderful to hear more and more of her little voice. Thank you again for all of the love and support - we would not be here today if it wasn’t for all of you! #TeamAddie #BeBraveBeBeautifulBeAWarrior #ETMRWarrior #CancerSurvivor
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Thank you to all of our friends, family and loved ones who have been there for us and Addie over these past two years. We apologize for not having posted an update recently. We have gotten so distracted by life, and trying to figure out our new normal... which has been a good thing! Addie is happy, growing and learning more every day! She has been enjoying classes in town, having play dates with her friends and we’ve even been able to travel a bit to spend some time with family.

We recently found out she has some more significant hearing loss in her right ear so she is scheduled to get a hearing aid soon. Hopefully we will be able to get it some time later this month... We are hopeful the hearing aid will improve her ability to communicate because she is desperate to talk but still unable to do so.

As I am sure some of you saw on Facebook, we are currently in the hospital with Addie, as she recovers from an emergency brain surgery she had yesterday afternoon. Her shunt (the mechanism that controls the fluid flow in her brain) malfunctioned and needed a repair. We are so thankful for her fast acting team who have all been taking such AMAZING care of her and troubleshooting everything so quickly. We also want to send a very special thank you to Addie’s angel on Earth, Dr. Rathmann, for dropping everything yesterday and doing the surgery ASAP :-) Addie made it through the surgery in true warrior fashion and is currently recovering in the PICU... while also being treated for RSV and pneumonia. When it rains, it certainly does pour over here, but we are so grateful that it wasn’t anything more serious and that she is getting the help and care she needs to recover and get stronger. We aren’t sure how long we will be in the hospital but they are monitoring her closely due to her continued fever.

Thank you all for the continued love and support, we will be sure to send out another update soon. She has her next big scan scheduled in two weeks so we are praying that she remains tumor free and that our current hospital stay is the most excitement we will see for the holidays #teamaddie #morethanfour #BeBraveBeBeautifulBeaWarrior
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It’s been a busy summer! We are happy to report that Addie just had her (hopefully) last maintenance chemo injection. She is scheduled for her next MRI at the end of September so we are praying for continued clean scans. The current plan, if the scans are clear, will be for her to remain on the clinical trial medication and oral chemo for another 13 months. The next hurdle that we are facing is eye surgery (currently scheduled for September 4th). We are hopeful that this will correct her exotropia (eyes turning out) which is a likely result from everything she had gone through over the last year. Her ophthalmologist is confident that it will be any easy surgery and recovery but we are obviously still nervous.

Addie continues to make progress in all of her therapies with now the main focus being on her language and communication skills. While she still is not speaking, she has improved so much in her ability to communicate through gestures and non verbal language. She is definitely the boss of the house and makes her opinions known!

Last month we were thrilled to celebrate her 2nd birthday. It was an amazing turn out with our closest family and friends. It was also a great reminder for us that we have so much to be thankful for. She enjoyed the spotlight and was excited to be surrounded by everyone who loves her. Vanessa and I were truly grateful to have had such a wonderful day.

We are looking forward to the cooler weather and all the fun activities that the fall has to offer. We will be sure to update with Addie’s scan results next month. Thank you all for continuing to support us and following Addie’s journey. #TeamAddie

As we approach the month of September which is pediatric cancer awareness month, please consider donating to Tackle Kids Cancer. Our children deserve better than 4% of federal funding for pediatric cancer research. #MoreThan4
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Friends, colleagues, and friends of friends who have been there for us in so many amazing and unexpected ways as we have fought alongside of our daughter, Adeline (Addie), during her heroic battle with brain cancer... we recently became friends with another family whose daughter is battling the same inconceivable fight . Coincidentally, their 4 year old daughter, Ireland, was diagnosed the same week as Addie. She was also recently enrolled in the same ETMR clinical trial - as a result of my wife's amazing efforts to connect families with new and evolving treatment options. Unfortunately, Ireland's insurance is refusing to pay for any of the treatment related expenses, stating that unproven medication such as this clinical trial is not "covered".

When Addie was diagnosed, her doctors predicted a 9% chance of survival. With only 300 documented cases of this type of tumor and no proven treatment options, we desperately searched for alternative means to help defy those odds and were fortunate enough to have found this Michigan-based clinical trial, of which Ireland is now enrolled. We feel strongly that this is a key component of Addie's treatment in preventing relapse.

Connecting with other families, like Ireland's, has made us realize how much more research needs to be done. This is such a rare type of tumor that only typically impacts children ages 4 and below. We need more research and support to find cures and experimental treatment options. By supporting Ireland, you would not only be helping a little girl fight cancer, but you would also be supporting medical research that will hopefully one day lead to a cure for ETMR and other deadly brain tumors.

With humble hearts, we are asking you to please consider donating to their treatment fund in order to support Ireland's fight the same way you supported us during Addie's darkest moments. Any amount is greatly appreciated.

https://www.gofundme.com/irelands-dfmo-clinical-trial-fund
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Read a Previous Update
Tracy Weinstein Berk
23 months ago
2
2

What a great update!

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Mildred Rodriguez Padilla
23 months ago
1
1

My prayers, god is good! sweet Addie a brave little girl. sending my love

+ Read More
Nancy Mercure
23 months ago
1
1

Thanks so much for the update on beautiful, brave Addie!!! She is an amazing little one, and your family is handling all of this so strongly. We continue to pray every day that the Good Lord will help you all through this and heal this precious child.

+ Read More
Marilyn Albanese
27 months ago
1
1

O LORD my God, I called to you for help and you healed me. Psalm 30:2

+ Read More
Barbara McLaughlin
27 months ago
1
1

my prayers are with this family. My Little Jesus if it be they holy will, look down upon my poor petition and grant the favor I so earnestly beg of they. In return I will forever love they and make they known and loved by all. My little Jesus I love they.

+ Read More
Mildred Rodriguez Padilla
29 months ago
1
1

Praying for sweet Addie and Brian, Vanessa, God is good

+ Read More
Austin Ssemambo Chase
29 months ago
1
1

Prayers

+ Read More
Josephine
4 months ago

That is such great news!

+ Read More
Donna
4 months ago

Addie is a beautiful little girl. I’m so happy for her and your family. The power of prayer is showing on the face of this child. Thank you for stopping by so we could meet her.

+ Read More
Lu
4 months ago

That is awesome news.

+ Read More
Josephine
6 months ago

Thank you for the update. I think and pray for Addie all the time. I wish you all a very Merry Christmas and hope the new year brings healing to all of you!

+ Read More
Mildred Rodriguez Padilla
12 months ago

This is wonderful news, God is good! Addie's a trooper, sending my love

+ Read More
Josephine Gallippi
12 months ago

What a great update! God bless your beautiful daughter!

+ Read More
Henry Burgess
12 months ago

She is so cute. Fantastic update! So happy to hear all about Addie's progress.

+ Read More
Karen Makara
12 months ago

Fantastic update! XOXOXOXOX

+ Read More
Lu Thomson
16 months ago

Bless this sweet family

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Bonnie Spiegel
18 months ago

What a beautiful, precious little angel. Merry Christmas to all of you!

+ Read More
Josephine Gallippi
18 months ago

What a beautiful child! So happy she is doing well. Merry Christmas and Happy New Year!

+ Read More
Nancy Mercure
20 months ago

So relieved for all of you! We at Transfiguration of Jesus Catholic Church have been praying very hard for the scans to be clean, and we are delighted that these prayers have been answered. So glad you could get away for a nice weekend with your beautiful and brave little pumpkin!! God bless all of you!!

+ Read More
Lu Thomson
20 months ago

Wonderful update and pics. Just praying you keep getting positive results

+ Read More

$81,158 of $15,000 goal

Raised by 690 people in 29 months
Created January 17, 2017
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$100
Anonymous
4 months ago
$50
Anonymous
6 months ago
MD
$50
Maryalice DeCamp
6 months ago

Keeping you all in my thoughts and prayers!

PG
$50
Paschal Grande
6 months ago
VK
$50
Vicki Kamenova
6 months ago
$100
Anonymous
6 months ago
SD
$50
Sophie Ding
6 months ago
$40
Nidia Cressy
6 months ago

Lots of love baby girl! Xoxo

SP
$50
Snehal Pokharkar
6 months ago
Tracy Weinstein Berk
23 months ago
2
2

What a great update!

+ Read More
Mildred Rodriguez Padilla
23 months ago
1
1

My prayers, god is good! sweet Addie a brave little girl. sending my love

+ Read More
Nancy Mercure
23 months ago
1
1

Thanks so much for the update on beautiful, brave Addie!!! She is an amazing little one, and your family is handling all of this so strongly. We continue to pray every day that the Good Lord will help you all through this and heal this precious child.

+ Read More
Marilyn Albanese
27 months ago
1
1

O LORD my God, I called to you for help and you healed me. Psalm 30:2

+ Read More
Barbara McLaughlin
27 months ago
1
1

my prayers are with this family. My Little Jesus if it be they holy will, look down upon my poor petition and grant the favor I so earnestly beg of they. In return I will forever love they and make they known and loved by all. My little Jesus I love they.

+ Read More
Mildred Rodriguez Padilla
29 months ago
1
1

Praying for sweet Addie and Brian, Vanessa, God is good

+ Read More
Austin Ssemambo Chase
29 months ago
1
1

Prayers

+ Read More
Josephine
4 months ago

That is such great news!

+ Read More
Donna
4 months ago

Addie is a beautiful little girl. I’m so happy for her and your family. The power of prayer is showing on the face of this child. Thank you for stopping by so we could meet her.

+ Read More
Lu
4 months ago

That is awesome news.

+ Read More
Josephine
6 months ago

Thank you for the update. I think and pray for Addie all the time. I wish you all a very Merry Christmas and hope the new year brings healing to all of you!

+ Read More
Mildred Rodriguez Padilla
12 months ago

This is wonderful news, God is good! Addie's a trooper, sending my love

+ Read More
Josephine Gallippi
12 months ago

What a great update! God bless your beautiful daughter!

+ Read More
Henry Burgess
12 months ago

She is so cute. Fantastic update! So happy to hear all about Addie's progress.

+ Read More
Karen Makara
12 months ago

Fantastic update! XOXOXOXOX

+ Read More
Lu Thomson
16 months ago

Bless this sweet family

+ Read More
Bonnie Spiegel
18 months ago

What a beautiful, precious little angel. Merry Christmas to all of you!

+ Read More
Josephine Gallippi
18 months ago

What a beautiful child! So happy she is doing well. Merry Christmas and Happy New Year!

+ Read More
Nancy Mercure
20 months ago

So relieved for all of you! We at Transfiguration of Jesus Catholic Church have been praying very hard for the scans to be clean, and we are delighted that these prayers have been answered. So glad you could get away for a nice weekend with your beautiful and brave little pumpkin!! God bless all of you!!

+ Read More
Lu Thomson
20 months ago

Wonderful update and pics. Just praying you keep getting positive results

+ Read More
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