The Miracle of Marisol
Marisol Ramirez was born with jejunal atresia, a condition where the small intestine is completely blocked. On the day Marisol was born she was immediately transferred to Children’s Hospital where surgery was performed to remove that blocked portion of her intestine. Unfortunately, this led to a different condition called short gut syndrome which prevented her from leaving the hospital until she was four months old. Once home, she could only eat small portions of food and was dependent on TPN, or IV fluids, for calories and vitamins. After an unsuccessful attempt to lengthen her intestine, her GI Doctor placed Marisol on the transplant wait list, explaining to us that this would be the only option for Marisol to grow up healthy.
In September, 2009 a precious life was taken and a precious gift was given to us. At the age of eight, Marisol had been given an opportunity of a normal childhood with a multi-organ transplant consisting of a new liver, pancreas, small intestine and colon. However, in January of 2010, Marisol was diagnosed with B Cell Lymphoma, a type of cancer that attacks the lymph nodes. This specific type of cancer is a “side effect” from the anti- rejection medicine. She underwent chemotherapy and we thank God she is cancer free.
Since conquering cancer, Marisol’s quality of life hasn’t improved much. Her doctor’s explained that the chemo has caused a lot of damage to her transplanted organs and her quality of life won’t improve without another multi-organ transplant. On November 6, 2015, Marisol was officially relisted for another transplant.
Transplants are life-saving but financially draining. Even with insurance, Marisol and her family are facing very high expenses including travel from her home in Maryland to Children’s Hospital of Pittsburgh of UPMC. There will be the cost of relocation for both Marisol and her caregiver at the time of transplant and recovery. The cost of the immunosuppressant medications is enormously expensive and lifelong. Despite all Marisol has faced throughout her young life, she remains a happy child but suffers from extreme anxiety, as you can imagine. Her sweet four-legged companion, Kuzko, will be trained so he can catch these attacks before they escalate. This too will cost the family but is absolutely necessary.
To help with the financial burden of Marisol Ramirez’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the Mid-Atlantic Multi-Visceral Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider a contribution.
For credit card contributions, please click the yellow Donate Now button.
Thank you in advance for your prayers, support and generosity.
Susie Hurley (family friend)
June 27, 2018
Back in Pittsburgh. Marisol had not been feeling well and her team ordered a chest xray. The xray confirmed she has pneumonia she also has an infection in her broviac (the line that she gets connected to with fluids nightly). The team wanted her in Pittsburgh ASAP and with a 5 hour drive we arrived to the hospital at 3 am. We are exhausted but thank God arrived safely. Please keep Marisol in your prayers. God bless #donatelife #miraclemarisol
July 13, 2017
Marisol has been doing great! She had an awsome weekend at Ocean City with her cousins.
Her kidneys have been acting up a little so her transplant team wanted her to be seen by their Nephrologist to see if they recommend anything. She will also be seen by her transplant team. Marisol’s appointment is at 8:00 on Thursday and with a 5 hour drive to Pittsburgh we came Wednesday afternoon. Thanks to a wonderful organization called AngelFlight and an awsome pilot @Anthony Loguidice we made it to Pittsburgh in under 2 hours.
Marisol and I went out to dinner and are now enjoying Paint Night at the Ronald McDonald house. God willing we will be heading home after clinic. Please keep her in your prayers and I will update tomorrow. God bless.
July 11, 2017
Today marks 1 year and 8 months of Marisol being listed. We are really learning patience.
Marisol has been doing great thank God, she did have a tough decision to face. Kuzko had been having a lot of anxiety and crying a lot we had to stop practicing public access. We took him to a local trainer and we made a decision to re home Kuzko and start service dog training all over .
Kuzko’s anxiety couldn’t be controlled which made it difficult to take him to the hospital with his anxiety high and adding Marisol’s anxiety would make it worst and he could react in a negative manner if a doctor or nurse were to come into her room and cause her to have more anxiety.
We did not find it fair to put Kuzko in that position. It was the toughest decision for her and us but we knew the purpose of Kuzko was to assist her medically when she’s most vulnerable in the hospital. After a lot of talking and crying and praying. We completely agreed and supported her decision. We find comfort knowing who Kuzko is with and can maintain in contact with them. Kuzko has a new playing partner and is loving his new home. It is very difficult starting training all over with a different dog and always thinking of Kuzko.
We would like to present Marisol’s service dog in training. Fozzie, he is a 10 week old Goldendoodle. Marisol has had Fozzie for a week now and he’s a lot of work. Fozzie comes with a strict schedule and Marisol has been doing great on sticking with it. We had quite a few nights of Fozzie crying all night but Marisol is getting to know him and what he wants and he’s been doing great the past few nights. This is a bittersweet experience for Marisol but we all know how strong she is and know she will get through this. Kuz can never be replaced and will always have a huge part in our hearts.
We would like to thank American K9 for donating Fozzie to Marisol. Service dog training is very expensive and is not covered by insurance. We know God put this opportunity in our lives and we leave it all in his hands. Have a great weekend. God bless. #miraclemarisol
June 19, 2017
I know we haven’t posted for a while but no news is good news. The Ramirez family has been enjoying the outdoors and beautiful weather! We all had cabin fever from the winter. 1 year and 7 months waiting but hey who’s counting….Spent the day spoiling Kuzko at the dog park followed by getting him Rita’s. Stay tuned for big news coming! God bless and happy Father’s day specially to Steven for being such an amazing father and husband on this journey. #miraclemarisol
May 16, 2017
Home sweet home! Nothing like being together again. We’ll be catching up on some much needed peace and quiet and family time. Have a blessed day!
May 12, 2017
Day 2 went well today. Marisol had transplant clinic and a few tests today. We’ll have more information once they get the results. Marisol is feeling great but missing Kuzko terribly, she can’t wait to see him at home. She’s been having a blast with Jaycee. The girls did an art project today and had fun roaming the hallways. It’s do nice seeing them have a good time eventhough their in the hospital. #realredbandsociety #miraclemarisol
May 12, 2017
We arrived safely last night and Mari and Jaycee spent the night chattering away. Today Marisol has 2 appointments and in between will be catching up with Jaycee. We are so grateful these girls have eachother. Marisol has never been so happy to actually come to the hospital since she knew Jaycee was here. I’ll update this evening. God bless
April 28, 2017
Month 17…. Marisol has been doing great since she’s been home. We are almost at a year and a half of waiting. Very weird how our mentality changes as we wait for the call. When Marisol was first listed we were anxious for the call and wouldn’t go anywhere, then it became frustrating as we can’t make plans specially far from home as we have have 6 hours to get to the hospital from when she recieves the call (it’s a 5 hour drive so not much wiggle room). Now we try to plan things but always have a “backup person” in case we are doing something and need to drop everything.
Over the weekend Jr had a wrestling tournament in Ocean City. I was nervous about going and bringing Marisol as she loves to see her brother wrestle (he placed 4th in the states for his weight class, not to brag
March 6, 2017
Marisol has been doing great! All the Glory to God. We are at month 16 of waiting for “the call” and though she has not so good days she has been hospital free 10 months!! This is something we have never experienced since her birth. Her team in Pittsburgh is awsome and so accommodating to us that they manage everything from there so we won’t have to make that long trip. We are so grateful to God that even though this has been a long wait Marisol has been feeling good. She returned to school this week and it was Spirit week so she went dressed as the 80’s era. She had a great time and was so happy to see her friends. The plan is for her to attend school once a week and then work with her teacher at home (she gets quite tired very easily and needs a lot of rest during the day). It’s hard to believe that our hero will be 16 in 2 weeks!!!! I remember the day the doctor’s told us she wouldn’t make past her first few years of life but our warrior is a fighter and proved them wrong! When you have God on your side you don’t have to worry about anything.
Kuzko has been doing great also. He passed his Citizen Canine Test and the groundwork has been laid for him to pass his Public access test next time he goes for training. We love watching that bond that Marisol and him have. When she’s feeling crummy he’s right by her side and when she’s crying he lays on her lap and won’t leave her side until she’s calm. He has been such a huge help to her independence both physically and emotionally.
We are asking our prayer warriors to please keep Jaycee in your prayers. Jaycee and Marisol have been through this journey together for the past 8 years. They had their transplants together, got through lymphoma together and are both now being treated at Pittsburgh together. These girls are sisters from other misters and we look at Jaycee as our daughter. She is going through some complications and is currently in the hospital. Please keep her and her mother Danette in your prayers. Danette has been such a blessing to me personally and I couldn’t have gotten through this journey without her. I hope everyone has a wonderful weekend. God bless.
February 7, 2017
Mari got some one on one service training today at the mall and Kuzko did great! He is off to training with Nicole for the week. Marisol is doing so much better with letting him go for the week now. She sees how much he learns when he returns and how useful it is for her. Thank you so much for participating in Marisol’s fundraisers as it helps us to get fully trained as well as prepare for transplant time. #miraclemarisol #donatelife
January 31, 2017
Ever wonder what 1, 806 pounds looks like? It fills a uhaul truck to the top! Thank you so much to everyone who contributed, helped spread the word, our Lifehouse Church family for storing it all for our #miraclemarisol fundraiser. We appreciate and love you all!
Marisol has been doing great thank God. She even went back to school last week and was super happy. She is currently at the mall with her cousin shopping! Thanks for all your prayers. God bless!
January 18, 2017
Happy New Year’s! We had a quiet one at home the 4 of us and it was great! 2016 started out pretty rough but the good definitely out weighed the bad. Marisol got to attend her first UMD softball game, she had her wish granted and we went on a fabulous Disney Cruise, Marisol was able to attend camp fantastic for the whole week ( something she hadn’t been able to for the past few years). Two of her main blessings were getting Kuzko and being able to meet and spend time with Kyla’s family ( Kyla is the angel who gave Marisol the gift of life with her 1st organ transplant). We also have been home 7 months now from the hospital. We were able to spend Christmas and Thanksgiving with our family. Marisol also attended a lot of music concerts from different artists she loves.
We are at month 13 of waiting for “the call” but we know God is preparing us as it will be a long journey apart from eachother. For now we are concentrating on preparing spiritually as we know the battle we have ahead. I couldn’t understand why she has had to wait so long for this but I know God is giving us time to spend together and make fun memories and telling us to come closer to him not to look for him just in times of trouble. I also understand that whomever maybe giving Marisol the gift of life isn’t finished making memories and the least we can do is sit patiently and wait. We will have a lifetime to make memories and there time is limited. Marisol does have bad days and it’s hard seeing her in pain but we leave it in our father’s hands. We have watched how hard her body works and how extra rest is needed more and more. This is very frustrating for a 15 year old who would rather be in school with her friends doing ” normal activities”. It’s also frustrating that she can’t spend the night at her friend’s homes since she is connected to a machine 10 hours a night receiving tpn; but we give thanks to God that her tears quickly turn into that contagious smile when Kuzko starts licking her whenever she cry’s.
We thank you all for all the continued prayers, messages and for our family, friends and neighbors whom have organized and participated in her fundraisers. Those funds are kept by Help Hope Live and are used just for Kuzko’s training as well as for costs when she is in the hospital. Thanks again for all your support and God bless!
January 18, 2017
We hope everyone had a wonderful Thanksgiving. We are so thankful to God for being able to spend it with our family. Marisol had a great time and ate a lot!!! We have learned not to take these times for granted.
Kuzko is off to training for the week with Nicole. Mari did well dropping him off today as she knows it’s only one week this time and she saw how much more helpful Kuzko was when he got back from his last training. Thank you all for supporting Marisol’s fundraisers. Many of you have seen the difference in Marisol now that she has Kuzko and it wouldn’t be possible with all of your support. Have a wonderful week. God bless.
November 14, 2016
Hello family and friends tomorrow is the last day to order #miraclemarisol fundraising t-shirts to have them for Thanksgiving. Please see flyer to place your order. Thanks for your support!
November 8, 2016
Saturday officially marked one year of Marisol being on the transplant wait list. She is at the top of the list but so many different things need to match in order to find a perfect donor for Mari. We are trying to stay patient but it is hard for us to put everything on pause ( we can’t travel far or make plans as we don’t know when we get the call). Once it’s time we have a specific amount of time to get to the hospital. Now that winter is coming the Ramirez family will be “hibernating” as this season is the hardest for the immune compromised. A flu or cold for us can be very serious for Marisol as she has ended up in the hospital on a ventilator before. The goal is for Marisol to be as healthy as possible for transplant time to avoid complications. Marisol wasn’t able to attend school last week as she had one of her flare ups. Antibiotics were started and she’s feeling better now thank God. She will be having labs tomorrow and possibly started on a long term antibiotic so hopefully these flare ups won’t be so close together.
November 3, 2016
Thank you so much to all our friends, CPA classmates, and family members that came out to support our hero! It was so nice seeing everyone. We really appreciate all your support. If you couldn’t make it you can still help support with Marisol’s expenses by purchasing a #miraclemarisol t-shirt. Thanks again!
October 24, 2016
Marisol has had a super busy week! Last Sunday she sat in the dugout with the UMD softball team and had a great time. Wednesday she was given tickets to see SIA and Thursday her first outing to a restaurant with Kuzko! He did awesome! Saturday we went to six flags freight Fest with her cousins. God knew she was having a rough week so he kept her busy!
We have decided for Marisol to attend school everyother day as she comes home exhausted from full days. She feels so frustrated that she tires so quickly but we explained to her that her body is fighting super hard to keep working and just try to hang on until it’s transplant time. It’s so hard seeing her tire so easily but we have faith in God and know that it will be transplant time at his perfect timing.
On Tuesday November 1st we’ll be having a fundraiser for Marisol at Chick fil a. Please see flyer for location and time. We are raising funds to assist with the cost of Kuzko’s training which will be about $10,000. Unfortunately insurance doesn’t cover service dogs and we know this is something Marisol needs. We would appreciate your support! Have a wonderful week!
October 5, 2016
Marisol has had a pretty rough week. We were worried we would have to end up in Pittsburgh but thank God she’s feeling better. She started itching and with stomach pain last weekend. She didn’t attend school the whole week. We are so grateful to God for providing us with such a great transplant team. We all know the warning signs for when the cholangitis is flaring up (infection in her bile ducts). Her team ordered her labs and saw her liver counts were a bit high so they immediately started her on antibiotics and thank God she has responded well. She has however picked up a bad cough. She will be having labs drawn this week as well as a liver ultrasound to make sure nothing else could be causing the pain and itching. She did however have a great day on Friday. Kuzko came home from training. Mari and Jr are so happy to have him back. We hope everyone has a wonderful week. God bless.
September 26, 2016
9/17/09 we were sitting in the waiting room while our hero endured a 16 hour multi organ transplant. We spent 2 months in the hospital. 9/17/16 we spent Marisol’s 7th transplantversary with her angel Kyla’s family. Who would have expected that God would have worked it out for us to spend Kyla’s anniversary and Marisol’s transplantversary together. Our 2 families are now one and this has been the best healing experience for both families. It couldn’t have been more perfect. We will forever be grateful for this blessing that God has given us. Happy Transplantversary Marisol. We love you and are so proud of you our warrior! #miraclemarisol #donatelife
September 27, 2016
9/15/09 A special family was sitting in the hospital and had just lost their beautiful daughter Kyla. 7 years later I would have never imagined I would be spending that special anniversary meeting the family who unselfishly chose to #donatelife. This has been one of the most special days of our lives. #miraclemarisol
September 27, 2016
A bittersweet day for our hero. Kuzko is off to service dog training for the next 2 weeks. Marisol is super sad that Kuzko won’t be with her but she understands that this is the ultimate goal for him. She has to sacrifice a few weeks with him so she can spend all her time with him when he comes home. It was very emotional for her to say goodbye even Kuzko was crying with her. Although we haven’t raised the funds to cover the cost of training The Animal’s House is working with us and we really appreciate it. Our goal was to have him trained before transplant so that he can be at the hospital with Marisol and this is definitely one step closer. Our home will feel empty without him but we are excited to see what he’s learned when he returns. Please don’t forget tomorrow is the blood drive in honor of Marisol. Please email [email protected] to schedule your appointment. #miraclemarisol #donatelife
September 8, 2016
Officially month 10 of waiting.
August 29, 2016
First week of school completed. Marisol was so happy to be back in school. She started 1/2 days and was completely exhausted by Friday. Saturday she went on a tour with her softball team from University of Maryland and had so much fun. Today she’ll be going to a Back to school bash at church with her best friend. She’ll try half days again this week until she can endure a full day. Thanks for all the prayers and have a great week.
August 24, 2016
First day of school! Marisol wasn’t able to finish school last year since she spent most of the year in the hospital. She is so excited to be going back to school ( a little nervous also) and able to see her friends. Mommy is currently in her car crying but we know God is protecting her and Jr. And are so grateful to God for her feeling well enough to go to school.
August 22, 2016
She’s home! Marisol came home from camp yesterday and had a great time! They even had a celebration for her for staying there the whole week. Camp is the highlight of her summer each year and thank God she felt great the whole week. Tomorrow is the last day for her to relax and it’s back to school Tuesday. Thank you for all your prayers. God bless
August 22, 2016
One more day and my princess comes home! We have been calling and checking on her and she has been doing great!!! Thank God she has been able to make it through the whole week!!!
Jr and I had a great time in Atlantic City. We even met up with Danette and Jaycee for the day (Mari will be mad about that).
With the new school year starting Marisol will be having a blood drive in Marisol’s honor September 15 (which is the day her angel Kyla earned her wings) @Laurel High school from 2-8 pm. Please consider making an appointment. You can help save a life! Please contact her teacher Aubrie to make an appointment: [email protected]
August 5, 2016
Marisol has had a good week. She enjoyed her time off from Jr. but was ready for him to come home. We surprised Jr and re- did his room while he was at camp. Marisol had fun helping to paint. Thank God her labs this week look good. Friday will mark month 9 of waiting for her transplant. We know God is working everything out at his perfect timing and teaching us patience. We have created a Facebook page that you can also follow Marisol’s journey please search for it and like it: @miraclemarisol
Have a wonderful weekend. God bless!
August 4, 2016
Thank you so much for checking out Marisol’s page. We’ll be planning events and posting them on here. Please like her page on Facebook @miraclemarisol
July 29, 2016
Marisol was spotlighted on NBC as she was collecting and donating bags of cheer for kids and parents that were in the hospital over the holidays. Here is the video of #MiracleMarisol
July 29, 2016
Marisol has been doing great. Her labs from last week and this week are stable. Jr left to “Brass Camp” Sunday which is run by the same organization called Special Love that Marisol attends every summer. This camp is for the siblings of patients affected by Cancer. This is such an awsome organization that has helped us all out so much. I miss my mama’s boy but he definitely deserves a week of fun which we know he’s having since I’m stalking their Facebook page, lol. Marisol is enjoying having everything to her self. Jr will be back on Saturday and I can’t wait to see him. I hope everyone has a wonderful weekend. God bless
Photo Galleries (4)
July 17, 2018
Dear Marisol We pray for you every night. May God continue to strengthen you until a miracle of life gives you a new opportunity for a life with little hospital visits. We love you! Los Tamacas-Fuentes
Mail a Check
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Marisol Ramirez
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087