Lucia Needs Our Help!
As most of you know Lucia Marie Torres was born December 8th, 2017, and with those of you who know our family….understand the significance of this being the Feast of the Immaculate Conception…and it’s not a coincidence 🙂 Only a few days prior to that, did Annie and Victor learn just how serious her hypertropic cardiomyopathy was and that she may have Noonan Syndrome. As it turns out, our little LuLu’s heart condition was in fact quite serious. She spent the first six days of her life in the Pediatric Intensive Care Unit at the Joe DiMaggio Hospital in Hollywood, FL.
We all had to wait several weeks before finding out the results of her genetic testing. Lucia does have Noonan Syndrome. Lucia may exhibit several serious symptoms with Noonan Syndrome, but presently she has been exhibits the following:
· pulmonary stenosis
· hypertrophic cardiomyopathy
· congenital heart defects
Lucia has a wonderful team of doctors advocating for her, this includes her pediatric cardiology and transplant teams at the Joe DiMaggio Children’s Hospital. However, this specialized care does come at an added cost for Annie and Victor, who currently live in Naples which is about a 2 hour drive. With only the best as an option for their Lucia, they continue to travel to and from for hospital visits and will need to continue this pre- and post- transplant.
Please help us raise money for this beautiful family that is so much need of our help. This may be a lifetime struggle where Lucia will need to meet with several doctors for the rest of her life. Doctors that may include: pediatricians, surgeons, dermatologists, cardiologists, orthopedists, endocrinologists, and audiologists.
However, at this time, the immediate concern is if Annie’s health insurance will cover the cost of the transplant that Lucia so desperately needs. In addition to that, there will be medical expenses with the aspects of care and recovery (including copays, medications, transport, and much more) which are not covered by insurance. For less than a week in the NICU they have received a bill for over $149,000.
For the first year after a transplant, a patient remains at high risk for rejection, and there are many costs associated with monitoring and guarding against this, as well as with recuperation in other ways.
No parent should have to worry about the financial stress while dealing with this. My hope is that we can take some of the financial burden off of their family so they can focus solely on taking care of their precious baby girl. Annie has been out on maternity leave and Victor was laid off from his job right before Christmas. They need our help more than ever.
That’s where we can help! I’m setting up this fundraising campaign to help make a difference! Please give what you can and spread the word. All donations will help the Torres family. If you have questions about this process or about the campaign, feel free to email me using the contact link on the campaign page.
Our whole family thanks you for your continued LOVE and SUPPORT! Whether its a monetary contribution, one of prayer…or both…THANK YOU!
***If you are interested in wearing a bracelet to support Lucia please contact Liz Vargas or copy and paste the link below:
Updates (5)
June 16, 2018
May 16, 2018
Lucia got her life saving gift on Tuesday, May 15th!!!! Thank you all for your prayers and support!
May 15, 2018
Miracles do happen! Lucia's new heart beat within her on May 15th, 2018. This will be a very important day in our families lives. It was the day that she was given a chance to live.
Our family was recently approached by a friend that had been praying for Lucia. She felt compelled to give my sister Annie her rosary that she had gotten for the 100 year anniversary of Our Lady of Fatima while visiting Portugal. Surprisingly enough my family had been praying to Our Lady of Fatima and Sr. Lucia since Lucia was born in December. Once the rosary was in my hands i had goosebumps because the metal on the rosary had Sr. Lucia and was in the shape of a heart! I felt compelled to reach out to our prayer warriors and we all started a 9 day novena, which ended on the Feast of Our Lady of Fatima, which also happened to be Mother's Day. Our friends and family were united in prayer. Then the morning after the novena ended my sister got the news that there was a heart on its way to Lucia! This is a miracle, and Lucia has helped restore faith to so many out there. Our family mourns for the family that had to lose their baby but we will not let that be taken for granted. I know for a fact that God has big plans for our Braveheart and we all look forward to seeing what the future holds.
Lucia's surgery went very smoothly and she is recovering now. I look forward to the day when I can see her smile, and hear her laugh and cry again. I can't wait to see her go back home and just enjoy the little things that we desperately take for granted. Just sleeping in and snuggling in bed, holding your baby for as long as you want and just having family time together.
Please continue to pray for her recovery and the family that lost their baby. We are wearing 2 bracelets to show our support. One for our little Lulu and one for the baby that lost their life. Please let me know if you are interested in having a bracelet.
And don't forget that we are having our next fundraiser for our little braveheart on June 9th in Mokena, IL. We look forward to celebrating with everyone!
May 3, 2018
Here is a post from Annie :
It wasn’t her time two nights ago...I really thought it was. The doctor told us she wasn’t going to make it. He said he was really worried. We prayed over her, called a priest...I was going to hold her for what I thought would be her last moments. I literally thought she was going to die. Her cardiologist doctor is by far the BEST. He came at 5 in the morning and did an echo and tried a new drug that seemed to lower her heart rate. Lucia’s nurses are wonderful. We ❤️ this hospital. Our biggest fear is that she will not make it to her new heart. We hope it comes soon.
Lucia had two fevers last night and one episode of tachycardia again. Her cultures were sent to the lab to see what is causing her to have fevers. They gave her a paralytic drug to control her heart rate. This seemed to help. They didn’t mess too much with her other medicines last night and she didn’t have a heart rate higher than 170. Lucia is strong but her doctors said she isn’t clear or over this hump yet. Please continue to pray.
Lucia is so strong....thank you all for your prayers. Please continue to pray!
March 28, 2018
Last night Lucia took a turn for the worse and is back in the intensive care unit at Joe DiMaggio. She is intubated, hooked up to a ventilator and had a blood transfusion. They will be doing a balloon angioplasty to help with her heart function today. Prayers needed!!!
Photo Galleries (3)
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Guestbook
November 20, 2018
Hola Annie y Víctor, soy Jesus Gonzalez de Telemundo. Me gustaría ponerme en contacto con ustedes. Mi correo jesus.gonzalez@nbcuni.com
Jesús González
June 10, 2018
Unfortunately, I couldn't make it to the luau. May God continue to bless little Lulu and family!
Tisa Morris-Christian
June 10, 2018
Wish we could have made the luau yesterday. Phil and Ashley
Philip Kaufman
June 9, 2018
Sending our love and prayers. The Halbur family
Barbara Halbur
June 3, 2018
God bless little Lucia and her family and the little donor who saved her life. They will never be forgotten.
Joyce Bibzak
May 28, 2018
So happy that Lucia got the heart she needed!! God bless!
Ryan Jones
May 26, 2018
My thoughts and prayers have been with you. I am so glad little Lucia is doing better. All my love, Carl
Carl Racchini
May 21, 2018
Our prayers are with you and your little miracle. Our son was in the NICU for 3 months when he was born and one quote stuck to me: God gives his hardest battles to his strongest soldiers. We are with you Lucia!
Jennifer Gezella
May 21, 2018
Upon discovering this miracle of prayer and the power of the rosary, I have shared this with others here in Oregon. May God bless you and may Lucia live a long and healthy life. She is a miracle and a child of God whose family and friends prove the power of the rosary!
Tom Fullmer
Mater Dei Radio
www.materdeiradio.com
Tom Fullmer
May 21, 2018
Prayers are being sent baby girl❤️
Nicole Meminger
May 8, 2018
May Love without limits surround You and Your little Lucia as she pulls through this. May all the Love and support of Your ancestors be present with Lucia, as she is so strong but needs the guidance. Help her to find her way to her family who loves her so. ~ Praying for healing of the Heart.
Catrina Marie
May 8, 2018
Stay strong!! My little baby was born without heartbeat and we spend 2 months at a NICU praying for her everynight! I send you and baby Lucia all the love and healing energy! Only the creator knows! I send you all the strength to get you through this time!
Johana
April 17, 2018
Praying for you, your daughter and your family Annie!
Niki Dutton
April 13, 2018
As part of St. Agnes church, you have our complete support and prayers.
Love, Betty Durham
Eileen Matia
Dennis and Louise Scheffie
Eileen Matia
April 11, 2018
we are lifting up prayers to our Lord Jesus Christ for healing for Lucia, and strength and peace for your whole family.
Wayne and Lynn Wankel
April 10, 2018
Sending love light and BLESSINGS to your beautiful little angel and family
Jessica McCarthy
April 10, 2018
Sending Love to your family from mine. <3
Synergy Soul LLC
April 9, 2018
Saying prayers for the little angel...
Pauline Maes
April 9, 2018
Praying for you all and for her to receive her heart soon! Love to all!
Monica Feller
April 9, 2018
Praying for you all.
Samantha Ehl
April 8, 2018
Praying for you all.
Samantha Ehl
April 8, 2018
With God all things are possible.
Georgia Roselli
April 8, 2018
Praying God gives beautiful Lucia a heart. God bless all of you. ❤️
Betty O’Neill
April 7, 2018
Best wishes and prayers from a Naples resident Praying for a healthy heart to honor the Immaculate Conception Sorry I missed your fundraiser today
Margaret Reed
April 7, 2018
God bless her
Betty Ortiz
April 7, 2018
We are praying your Little Lucia and for your whole family.
Laura Hess
April 7, 2018
Your family is in our thoughts and prayers during this time. We pray that Baby Lucia will have a long, happy, and healthy life. Many blessings, The Nolan Family
LINDSAY NOLAN
April 7, 2018
I am sorry we could not make it to today's fundraiser. We are praying for sweet Lucia and your family.
Love,
The Vozzella Family
Lea Vozzella
April 7, 2018
May God Bless baby Lucia! Wishing the family all the support and love! Amanda Swartwout & Family
Gina Swartwout
April 7, 2018
You are loved by many people. Stay strong, Lucia. Xoxoxo
Stephen Sotelo
April 7, 2018
Our prayers are with Lucia and your family
Joseph & Denise Sciortino
April 6, 2018
You are in my prayers.
Debbie Dudley
April 6, 2018
Thinking of you and sending best wishes and hope to you all. Praying Lucia gets the help she needs asap. Sally Masters PA
Sally Masters
April 6, 2018
Good luck - our thoughts are with you!
Thomas Weilenmann
April 6, 2018
I a research doctor visiting Florida, I read your article and I do research on skin findings of PTPN11.
There are new medications for Noonan\'s related cardiomyopathy. Ask your doctors abut using an AKT-inhibitor on a compassionate need basis. See article below.
PLoS One. 2017 Jun 5;12(6):e0178905. doi: 10.1371/journal.pone.0178905. eCollection 2017.
In vivo efficacy of the AKT inhibitor ARQ 092 in Noonan Syndrome with multiple lentigines-associated hypertrophic cardiomyopathy.
Wang J1, Chandrasekhar V1, Abbadessa G2, Yu Y2, Schwartz B2, Kontaridis MI1,3.
Author information
Abstract
Noonan Syndrome with Multiple Lentigines (NSML, formerly LEOPARD syndrome) is an autosomal dominant \"RASopathy\" disorder manifesting in congenital heart disease. Most cases of NSML are caused by catalytically inactivating mutations in the protein tyrosine phosphatase (PTP), non-receptor type 11 (PTPN11), encoding the SH2 domain-containing PTP-2 (SHP2) protein. We previously generated knock-in mice harboring the PTPN11 mutation Y279C, one of the most common NSML alleles; these now-termed SHP2Y279C/+ mice recapitulate the human disorder and develop hypertrophic cardiomyopathy (HCM) by 12 weeks of age. Functionally, heart and/or cardiomyocyte lysates from SHP2Y279C/+ mice exhibit increased basal and agonist-induced AKT and mTOR activities. Here, we sought to determine whether we could reverse the hypertrophy in SHP2Y279C/+ mice using ARQ 092, an oral and selective allosteric AKT inhibitor currently in clinical trials for patients with PI3K/AKT-driven tumors or Proteus syndrome. We obtained echocardiographs of SHP2Y279C/+ and wildtype (SHP2+/+) littermates, either in the presence or absence of ARQ 092 at 12, 14, and 16 weeks of age. While SHP2Y279C/+ mice developed significant left ventricular hypertrophy by 12 weeks, as indicated by decreased chamber dimension and increased posterior wall thickness, treatment of SHP2Y279C/+ mice with ARQ 092 normalized the hypertrophy in as early as 2 weeks following treatment, with hearts comparable in size to those in wildtype (SHP2+/+) mice. In addition, we observed an increase in fractional shortening (FS%) in SHP2Y279C/+ mice, an effect of increased compensatory hypertrophy, which was not apparent in SHP2Y279C/+ mice treated with ARQ 092, suggesting functional improvement of HCM upon treatment with the AKT inhibitor. Finally, we found that ARQ 092 specifically inhibited AKT activity, as well as its downstream effectors, PRAS and S6RP in NSML mice. Taken together, these data suggest ARQ 092 may be a promising novel therapy for treatment of hypertrophy in NSML patients.
your doctors about AKT inhibitors.
trying to be helpful
April 6, 2018
May God Bless the Torres Family and provide Lucia with a new heart very quickly.
We are proud you are part of the St. Agnes family.
Love,
Tom and Judy Bohardt
Thomas Bohardt
April 6, 2018
I hope she gets everything she needs as well as you!! I know how hard it is to have your little one in the hospital, waiting, watching, when you cant do anything but wait! My prayers are going to you and your family. Keep your head up and pray to the man above everyday! Much love from your new friend in Lehigh!
stephanie garcia
April 5, 2018
Looking for a way to reach the family! My daughter was a cardiac baby and we had to transfer out of state! Facebook is Marie Smith! Please contact me!
I’m praying for your daughter ❤️
Rachael
April 5, 2018
Sending love, faith and strength to Lucia\'s parents and family. My donation is in tribute to my 8 year old niece, Kennedy, who is preparing for a kidney transplant in the St. Louis area. Kennedy\'s mom is also a teacher and also had to put her career on hold to focus on K\'s care. The layers of heartbreak and challenge can feel so overwhelming. We all are holding precious Lucia and the entire family in our prayers!
Lisa Gruenloh
April 5, 2018
❤️
Vincent DeBellis
April 5, 2018
#CCPSFamily
Lisa Morse
April 4, 2018
Please know that you are never alone!! Our prayers are with you!!
Raul Garcia
April 4, 2018
Hope your daughter gets the transplants she needs. Will be praying for her.
Jonathan Perez
April 4, 2018
Keep fighting, Lucia!
Davis Cooper
April 4, 2018
Keep fighting Little Lucia!
You're tough like all the ladies in your family!
Lynn & Kevin Kodrick
April 4, 2018
I found out about this campaign from Beronica Roblero. I am so sad about the pain the family must be going through. To see your small baby having to fight so hard. Oh my gosh my heart goes out to this family and my prayers will be with you all. Especially for this precious little girl. God Bless you and keep you safe.
Ginette Carrier
April 4, 2018
Blessings to your beautiful baby, our prayers and thoughts are with your family.
Natalia Goitia
April 3, 2018
Good luck, Lucia
Paul Lampasona
April 2, 2018
This donation is from Ricks aunt Judy. She sends her prayers and thoughts your way.
Judy Landers
April 1, 2018
Prayers for Lucia and the Family
Tammy Taylor
March 30, 2018
Prayers for baby Lucia.
Linda Kilroy/Tom Godsey
March 30, 2018
Praying for the family!
Evelyn Smith
March 30, 2018
Prayers will be said for Lucia and her family to help them through this difficult time.
Barbara Duncan
March 29, 2018
I know when my son was born premmie and was in the hospital for 34 day i was a mess and didn't feel strong. but you are going through something much worse and from what i have heard you are a strong mom and a great mom. i will pray daily
Lisa Murray
March 29, 2018
Love and prayers always <3
Michelle McCray
March 28, 2018
Praying for sweet Lucia!
Janet Meyer
March 28, 2018
Lucia,
We hope for nothing but the best in this situation. Praying everyday and letting the rest in Gods hands. He is the only who knows what he does and why he does it. He has the final say.
I want you and your mommy and daddy to know that the Lugo’s are hear for whatever and whenever you need us. That’s what family is all about. We love you and God bless.
John 3:16
Jose Ricardo Lugo
March 26, 2018
Lucia, you are in our thoughts and prayers. May you get the best of care and always be in Gods hands.
Love, Spiros & Melissa Foustanellas
Spiros & Melissa Foustanellas
March 26, 2018
We hope the best for Lucia. Our prayers are with her and all the family.
Internal Medicine Partners Dr. Ralph Rodriguez & Dr. Alejandro Blanco
March 26, 2018
Uncle Rick and myself are praying for you, stay strong and know you’re always in our thoughts love ❤️ aunt Donna
Donna Coleman
March 23, 2018
My donation is being given as a memorial of Tom Godsey (Linda Kilroy's long time companion). Prayers to baby Lucia, and hugs to Annie and Victor in this battle. May God bless you!
JoAnne Benedick
March 21, 2018
Annie, stay strong for your baby and the baby will stay strong for you!!!!! Uncle Mike
Mike ONeill
March 19, 2018
Our love and prayers are with your family! Lucia is one tough little cookie... God Bless!
Patrick and Deanne ONeill
March 18, 2018
Lucia and the whole family have been in our prayers! God is meciful and capable of amazing things! May He wrap His arms around you all in comfort!
Melynda Radunz
March 17, 2018
My thoughts and prayers are with your family and beautiful Lucia!
Nikita Fondi (McKenzie)
March 17, 2018
Prayers for Lucia❤
Jodi Kennedy
March 17, 2018
Good luck Lucia! I’m sending lots of prayers your way.
Sara Robinson
March 16, 2018
We will continue to pray for sweet baby Lucia & her family!! Love, The Bolagno Family
Laura Bolagno
March 16, 2018
We all wish Lucia all the best for a speedy recovery and may God watch over her and bless her and your family.
Juarez Lawn Care
March 11, 2018
Praying for Lucia and your family. God's got her in the palm of His hand and has great plans for her life.
Hannah Schneider
March 11, 2018
Prayers for precious Lucia and her family.
Alan and Mary Helen Danaher
March 11, 2018
Praying for you, daily.
Mary Schott
March 11, 2018
God bless you all.
Jackie Di Cecco
March 11, 2018
God bless baby Lucia and watch over her always.
Linda Kilroy
March 10, 2018
Thoughts & prayes with the family.
Marge Taylor
March 9, 2018
Praying for Lucia
Mike Lambert
March 7, 2018
please keep us updated!
MJ Monnot
March 7, 2018
God bless your little angel and bless your family
Yeni Alonso
March 4, 2018
Thoughts and prayers to such a beautiful little fighter, LuLu
Penelope Ball
March 2, 2018
Sending all my love and prayers to this beautiful little girl and her family!
Sarah Pinto
March 2, 2018
You are all in our thoughts and prayers!!!
Jenny Wheeler
March 1, 2018
Praying for this precious Princess Braveheart! I have faith that a heart will be found for this little one! You will be in my thoughts, prayers and heart every day little angel!!!!
JoAnn Toppin
March 1, 2018
Thinking of beautiful Lucia and family. Much love Sara, Nathan and Julie Carrick.
Sara Carrick
March 1, 2018
Love you guys <3
Maritza Juarez
March 1, 2018
We continue praying for Baby Lucia! She is one strong little girl!!
Barbara Dorencz
March 1, 2018
Thinking and praying for you Lucia always! Love, Adam, Michelle, Aiden and Jackson
Michelle McCray
March 1, 2018
Stay strong my little braveheart <3
liz vargas
Mail a Check
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Lucia M Torres
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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