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Our Story

November 20, 2013 ~ Porter Grant Richardson entered this world kicking and screaming at 5:20pm weighing in at 6lbs 13oz/ 18.75" long. Due to complications during pregnancy and since Porter was born at 35 weeks, he spent the first couple weeks of his life in the NICU at UNC Hospital where he was closely monitored. His big job while there was to eat and grow. While in the NICU, the doctors discovered Porter had some minor heart defects – a pulmonary stenosis and thickened valves, nothing that anyone thought would be an issue. Porter would just require some follow up in the coming months.

On December 7th Megan and Steve were ecstatic to find out Porter was coming home and his big Brother Oliver was finally going to be able to meet him. Oliver tried talking to Porter but when Porter didn't answer him back he looked at us and said "Porter doesn't talk!" Oliver has been a great big brother always letting mom and dad know when Porter would cry (just in case they couldn't hear him) and that Porter was hungry. Between Porter's homecoming and New Year’s Day, the family was able to spend a lot of time together and even took some family pictures.

The date January 3, 2014 is permanently burned into their minds as it changed their lives forever. Porter took a drastic turn for the worse not wanting to eat and he was sleeping a lot. Steve and Megan rushed him to the ER and they admitted him into the PICU at UNC Children’s Hospital immediately. Initially the doctors thought he had an arrhythmia. He has now been diagnosed with Restrictive and Hypertrophic Cardiomyopathy. Additionally after numerous tests, Porter has been diagnosed with a rare form of a genetic disorder called Noonan’s Syndrome, only about 5% of people diagnosed with Noonan’s have the particular gene mutation that Porter has. These together are extremely rare in babies. With this type of heart disease the ventricles don't relax which doesn't allow them to fill with enough blood and the valves also thicken. In Porter's case the only "cure" for this is a heart transplant. As you can imagine this news has been devastating.

During the first few weeks in the PICU, Porter was very sensitive to any change in care and
everyone questioned whether he would survive. To this day, he remains on a ventilator and requires medications, which are keeping him alive until he receives his heart transplant. After much help from the cardiac team, Porter has been placed on the transplant list and is just waiting for a heart. The family has partnered with COTA (Children’s Organ Transplant Association) which is a national charity dedicated to helping families with transplant related expenses. As you can imagine the costs associated with transplant and continued care after transplant are significant. With love, prayers and support, we hope you will help this amazing family fight for Porter. Your caring donation to COTA in honor of Porter will help the family with medical expenses related to Porters treatment and ongoing long term care that will be needed.

 

With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure.  The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses.  In Cary, volunteers are raising funds for COTA in honor of transplant patients like local baby, Porter Richardson. 

Porter is the son of Steve and Megan Richardson.  Born on November 20, 2013, Porter was diagnosed with Hypertrophic Cardiomyopathy.  The doctors at University of North Carolina Hospital in Chapel Hill have recommended a life-saving heart transplant.  An estimated $75,000 is being raised by Cary volunteers. 

Comments

  • The COTA Staff

    We are happy to be working with you!

  • Jim Hatch

    The career staff at Jewish Family Services in Columbus, Ohio sends our best wishes for Porter and his courageous family. Very best, Jim and colleagues here.

  • Connie B. Washburn

    Continuing to lift all of you up in prayer and hope things go well. Connie Washburn

  • Carol Reynoldsb

    Hi Steve and Megan, Hugs to the boys! Love you and am praying for all of you. Aunt Carol

  • Connie Washburn

    Your blogs sound very uplifting and positive. Continuing to keep you all in our prayers and thoughts. Connie Washburn..WPUMC

  • Connie Washburn

    Sounds like Porter is keeping everyone busy...a GOOD thing.. Continued prayers to all of you.

  • Connie Washburn

    YEA! So glad Porter got to get in a onsie..looks so cute...hope things continue to go well..praying..

  • Connie Washburn

    love the photos and so glad to read that things continue to be looking well for Porter..prayers to all of you.

  • Connie Washburn

    I say go for all the cute outfits you want...he is so cute...continued prayers to all of you..

  • Connie Washburn

    This is wonderful news..I had not been on for a couple days, but have been praying for him and all of you...If you need anything, please let me know. I substitute once in a while, and have other church activities, but would would be glad to bring you meals, or any other things you might need, groceries, We also have an adult daughter who is a nanny, but also "baby" sits..if you need help with your other son, she or I would be glad to come help..She has had experience with a few other children that have had some special medical needs, not quite as severe as Porter's, and I have worked with some children in the spec. ed. classes at Cary El. that have had many needs..If you could use meals now, please let me know...I know our Sunday School class would be glad to chip in, plus they could put out the word in the church newsletter and people can sign up on a site they have in place. Our number is 919-467-2940,,,we will be in and out a few times in the next few weeks, but call and check if you need anything...Sincerely, Connie B. Washburn

  • Connie B. Washburn

    Glad to read that relieving helped...I know how that can feel:) Hope Easter went well for all of you. Connie Washburn

  • Connie B. Washburn

    our thoughts and prayers to the family.

  • Connie B. Washburn

    Continuing to be in prayers for your friends down the hall and also for your family and Porter. Hoping a heart becomes available soon...

  • Connie B. Washburn

    Sorry to read the latest update. Will certainly be keeping all of you in our prayers..let us know if we can help.

  • Connie B. Washburn

    Hope today goes well. Will be thinking of all of you and praying for Porter.

  • Connie B. Washburn

    hope all is stable for Porter and things are going ok today. continued prayers to all of you Connie Washburn

  • Connie B. Washburn

    Continuing to keep Porter and all of his loved ones in our prayers. Connie Washburn

  • Connie B. Washburn

    continuing prayers for Porter and all of you...hope what the doctor's are doing will help a lot...

  • Judy Montanaro

    Have been following Porter's progress through some friends of your mom's. Glad to have found this site! Your family is often in my thoughts and prayers as you endure this exhausting wait.

  • cbwvu66@gmail.com

    Continuing to lift up Porter and all of you in my prayers

  • cbwvu66@gmail.com

    Happy 6th month birthday, Porter...hope you have MANY, MANY more..

  • cbwvu66@gmail.com

    Sorry to hear things are going this way, but have faith that in Texas they will know what to do and that a heart will be available..maybe you will meet Jen Arnold from Little Couple will be there...don't know if you have ever seen their show, but it is great. She does work with infants and has just come through a bout of cancer, but is in total remission, now. Best of luck on your trip and God Bless you..

  • cbwvu66@gmail.com

    So glad you got there safely and the Daddy was able to get there, also. Lifting up prayers for your family and the medical staff.

  • JOE LATON

    You are all in my prayers daily. Texas is so big in every way, and I am sure they can cure anything. I am the victim of the minor car accident with Steve. My granddaughter, Brooke, is the same age as Porter, and I think of him each time I visit her.........May God richly bless all of you and hold you in his hands as Porter is held in Steve's hands. Joe Laton

  • cbwvu66@gmail.com

    so sorry for all that you are going through.Will pray that they find the WAY that will work to improve Porter's heart and put your family at ease. Glad to see that was enjoying playing with crib toys, etc.

  • cbwvu66@gmail.com

    So glad to hear some good news. I think the new room will be quite a blessing to you. It is easier to be a family in rooms like that..Bet he does look cute in those outfits..Hope his brother is doing well..If there is anything we can do, let me know. I will be out of town starting this coming Sunday. Going on a yearly cruise with my hometown friends.. Prayers to all of you.

  • cbwvu66@gmail.com

    sounds like Porter is doing well..hope things continue to get even better. Prayers to you all.

  • cbwvu66@gmail.com

    Praying that things go well during this anxious transition..Will be thinking of you today..

  • Beth Laverty

    LOVE that picture of Porter! You all are in our prayers. Thank you for keeping us all up to date on his progress!

  • Beth Laverty

    Limbo and waiting is SO hard and I know your are exhausted. We will continue to pray for you all. Hang in there and know you are loved from afar. Praying God's supernatural peace rest on you and His hand be with the medical team as they discern the next steps for that sweet little boy.

  • cbwvu66@gmail.com

    Continued prayers to your entire family. Hopefully they will decide on a treatment program that makes you all feel a little more sane. Hope you are able to get some rest and quiet time..although, I am sure it is hard to do either.. Prayers

  • cbwvu66@gmail.com

    So sorry that you are having to go through this...I know other parents that have had children with really severe situations that also had to keep on top of what was going on..it is mentally and physically exhausting. I hope that things get organized and on a better communication level for you..more stress is NOT what you need. Will be praying that things get worked out and you get a little more peace..

  • The Middendorfs

    We continue our prayers, wishing there was so much more we could do. Prayers for strength and answers!

  • cbwvu66@gmail.com

    hope things continue to go as well as they can...am praying and hoping more good information and ideas come your way.

  • cbwvu66@gmail.com

    continued prayers as you await the many decisions that will have to be made.. Praying for you all.

  • cbwvu66@gmail.com

    sounds like Porter is having some great new experiences. I'm sure there are more to come. Glad he got to visit with his brother...

  • cbwvu66@gmail.com

    glad to hear he had a fun weekend...

  • cbwvu66@gmail.com

    Hope you get to see the surgeon and find out what they are thinking..he looks so cute and in good spirits..

  • Cara Phillips Schusterman

    Wish I was there to play with my friend! Lauren is keeping me updated but still thinking about y'all often.

  • cbwvu66@gmail.com

    We will continue to pray for all of you..if you need anything done on this end..please let me know..you may have gotten this twice..something weird happened when I just tried to sent this same message

  • Bunny Rodak and Bob Hartman

    Monica's father and step-mother here. Just wanted to let you know that we pray daily for Porter- and for all of you. He is so cute. Hopefully some answers and some healing will come quickly. Bunny and Bob

  • cbwvu66@gmail.com

    what a cute picture...sounds like some wonderful events are happening..hope they continue and that the next session gives some positive reports.

  • cbwvu66@gmail.com

    Sounds great that a plan is at least in the promising future. We send our thoughts and will continue prayers that things go well.

  • Rick Lofgren, COTA President

    Greetings from COTA! I want to congratulate the COTA for Porter R team for an outstanding job raising funds for the campaign and now in honor of Porter! When I set the campaign fundraising goals with all of our families, I try to do so knowing that some communities and volunteer teams have more developed resources and connections than others, and in fundraising these are critical to success. With this in mind, I usually suggest a goal to COTA parents that I believe is needed for any patient’s long-term expenses and transplant-related costs, and the goal generally reflects the next four to five years of out-of-pocket costs. For example, most of our patients will have $5,000 in annual co-payments, deductibles, and medications, as well as $2,500 of annual travel costs for clinic visits. This could mean $10,000 - $25,000 for these costs alone for any patient in two or three years after transplant. In this case, because your team and supporters have done such a great job and with Porter’s recent transfer to Houston, I spoke with Megan this week, and suggested that we raise the goal to better reflect what I believe is the true long-term expense that patient incur given age, insurance and other factors for someone such as Porter in light of his ongoing care in coming years. Because of this, we have raised the goal for the COTA for Porter R team from $60,000 to $75,000 to reflect what I believe will be actual costs going forward. Please know there are many factors in this and that I bear the responsibility of justifying this to anyone who asks, and am prepared to do this as I believe that it is the right thing to do. I want to convey that this is not a request for everyone to go out and do more than previously planned, but simply a reflection of realistic long-term costs and the fact that this team may reach this new goal in 2015. Thank you for all the work and support you have provided to this point, and please keep Porter and the entire Richardson family in your prayers as they continue to traverse the road to transplant!

  • cbwvu66@gmail.com

    What a cute photo...sounds like he is really coming along with lots of his physical movements...hope all of this and more continue to be on the horizon..

  • cbwvu66@gmail.com

    Stand your ground,,,good,,You have seen him go through a lot and what seems to be the best he has been on certain meds, etc, Hope things Will continue prayers

  • cbwvu66@gmail.com

    Hope the tests bring good messages...Porter is so lucky to have parents like you..How is big brother doing?

  • cbwvu66@gmail.com

    Will be praying that a heart will come Porter's way SOON!

  • cbwvu66@gmail.com

    Parents can usually tell a lot about what their child needs by what has been going on..esp. as long as you all have..Will continue to pray for all of you and may you get the gift of a heart soon..

  • cbwvu66@gmail.com

    Sounds like a lot of exciting things have been happening..Hope all the things they are doing with Porter will successful in their job to help him..continued prayers to all of you..

  • cbwvu66@gmail.com

    It sounds like he has a lot of people that love and care about him. Great to read he is so engaged in some play and activities. I can't really imagine the stress of waiting for a phone call..I was really good friends with a couple that lived here whose son died and they donated his organs..he was 4 years old, they now live in Dallas...His twin sister is now a senior in high school..hard to believe..

  • cbwvu66@gmail.com

    glad to hear he is smiling..hope that all the other situations get cleared...prayers

  • cbwvu66@gmail.com

    So sorry to read about the events that transpired since yesterday. Will continue praying and hope that Porter gets better soon.

  • cbwvu66@gmail.com

    Glad to hear he is doing better and sounds like you are as pleased as you can be with the situation. He is so adorable...will keep praying for all of and especially Porter

  • cbwvu66@gmail.com

    So glad he got put at the top of the list...and hope he is feeling better..

  • cbwvu66@gmail.com

    Hope that track keeps being the one he is on...

  • cbwvu66@gmail.com

    So glad to read all the good things that happened the last couple days..hope he keeps on this track and that heart comes available...

  • cbwvu66@gmail.com

    so glad the brothers get to be together for a while...hope they have a great time and you and your husband have watching them.

  • cbwvu66@gmail.com

    So glad to read about the weight gain..hope the heart comes really soon..

  • cbwvu66@gmail.com

    Hoping that that heart comes through any moment...will definitely be keeping your family and especially Porter in my prayers..

  • Fiona Grygiel

    I so enjoy reading your blogs Meagan and I know one day soon it will hold the best news! It was a pleasure meeting your family at the golf tournament and so many of the players have been asking about Porter's progress. I send them all to your website for updates. I think of you guys often and wish you all the very best! Fiona

  • cbwvu66@gmail.com

    Hope Porter had a wonderful birthday...many blessing to him and to your family...may he experience many more...

  • cbwvu66@gmail.com

    I will certainly be praying for Porter that the heart is a great match....will be thinking about you today....Good luck..

  • cbwvu66@gmail.com

    This is great news...will pray that all goes well.. Hope Porter got some great birthday cards:)

  • Such great news!!

    Prayers for all you guys. Hang in there Porter. Love from Santa Barbara

  • cbwvu66@gmail.com

    so glad to hear things are going well...prayers that the heart continues to give Porter the life he deserves....will be thinking of you and praying...

  • grygielf@gmail.com

    Wonderful news! I wish you all the best.

  • cbwvu66@gmail.com

    Sounds so positive...continued prayers to all of you...

  • laurabates

    Prayers are coming daily from lots of Wake County and White Plains folk! So glad to hear the good news!

  • Megan

    Thank you all!!!

  • cbwvu66@gmail.com

    Still sounding good..so glad..continued prayers, etc..If your husband needs anything here, please let me know...If I am not subbing, which should slow down a little, I will be glad to do something, get groceries, watch your son...not sure what help you have back here...but don't hesitate to ask, and if I can do something, I will 919-467-2940 Connie Washburn

  • Gary and Linda Campbell

    Lori has been keeping us updated and we have kept our church updated on Porter's progress. So many prayers said for this little guy and so happy many have been answered. We continue to pray for your family, pray for a complete recovery for Porter, pray for the doctors and nurses and pray for the family of the little angel who made this possible. God bless you all. Gary and Linda Campbell (Lori's parents)

  • cbwvu66@gmail.com

    Sounds like things are going very well...will continue prayers.

  • cbwvu66@gmail.com

    Continues prayers for all of you..hope things continue to improve...

  • cbwvu66@gmail.com

    so glad to hear that things are going so well...continued prayers...

  • cbwvu66@gmail.com

    Hope things are continuing on a steady course...continues prayers..

  • cbwvu66@gmail.com

    So happy to read that Porter is doing well. I'm sure it is stressful watching all of this..or at least knowing that he going trough all the tests that he has to. Continued prayers to all of you..

  • cbwvu66@gmail.com

    Adorable photo of both boys...and it sounds like things are going great...may this holiday be a special one..will continue prayers for all of you...

  • cbwvu66@gmail.com

    So glad to hear that Porter is almost on his way home!

  • cbwvu66@gmail.com

    I am so happy that Porter is doing well and should be heading back this way. I know you and the family will be glad to be together...

  • cbwvu66@gmail.com

    So glad to hear that "hopefully" Porter and Mom will be back in Cary soon. Continued prayers and will be waiting to read when the trip has been made.

  • cbwvu66@gmail.com

    SO happy that things are going so well. I know you love being back in NC..Continued prayers for Porter and your entire family...

  • Judy Montanaro

    So so happy to hear your good news! Hope all continues to go well for all of you! Judy Montanaro

  • cbwvu66@gmail.com

    Hope things are going well. will be praying for Porter and your entire family

  • cbwvu66@gmail.com

    So sorry you all have been so stressed...I hope he is doing better today..I can't imagine the frustration you all are going through,and having an older child that probably feels a little left out sometimes is also a real issue. I will continue to pray and ask others to, also...hope things are better today and for a long time.. Connie Washburn

  • cbwvu66@gmail.com

    I will pray that this situation with nurses soon has a happy ending...will be thinking of your family..

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