Madeleine's Lifesaving Surgery
Madeleine's parents took her to a world-renowned deformity specialist in Florida, Dr. Feldman at the Paley Institute. On October 14, 2016 she had the first of two required corrective surgeries and has started four months of extensive rehabilitation, counselling and therapy to regain her strength and help her cope with the traumas of the past year. Before taking Madeleine to Florida, her parents, with the assistance of medical practitioners, sought advice from across Canada and the United States. They found Dr. David S Feldman, who has corrected and worked with many children who, like Madeleine, are living with arthrogryposis presenting in the core of the body. Dr. Feldman has a vast knowledge and understanding of how Madeleine’s underlying disease is affecting her skeletal makeup and overall health. Dr. Feldman’s team has a physical therapist trained to treat Madeleine’s condition. His practice is based on a team that works closely with him to help children with arthrogryposis achieve independent, meaningful, and successful lives.
The estimated cost for this life saving procedure and therapy is roughly $500,000 and that does not include travel, living expenses and lost wages for this family. Madeleine's parents have re-mortgaged their home, sold life insurance policies, and immediate family have helped with money to secure the first surgery she needed. They found out the afternoon before they left for Florida that MSP (British Columbia Medical Services Plan) has declined to help with any of the medical costs. The second of the two surgeries is scheduled in six weeks and has no source of funding.
There are very few surgeons in Canada who know how to perform the complex corrective surgery required and none with the experience to deal with the degree of difficulty that is presented by Madeleine’s arthrogryposis. The most specialized surgeon in Canada was unsuccessful. This surgeon had never before seen a case like Madeleine's and the results were disastrous. Specialized skill and experience with this rare disease is absolutely required to operate on a child with this condition. Madeleine has endured 11 surgeries thus far in her young life. Four of those were unsuccessful due in part to the related complexity of her disease.
The surgeon who performed Madeleine’s unsuccessful spine surgeries has refused to recommend that she receive MSP for her out of country surgery. He maintains that he can and should perform the corrective surgery. That was not an option Madeleine or her parents could consider after the pain and suffering of this past year. Her case highlights an enormous flaw in our system. The surgeon, who performed the unsuccessful surgeries that resulted in Madeleine’s extreme deformity, is the very person who must give the recommendation that would allow Madeleine to be funded outside Canada. The family is suffering extreme financial hardship because of the MSP decision and their suffering has been compounded by the fact that, without the MSP endorsement, no charities have been able to help even though Madeleine would most certainly be eligible.
Madeleine lost the ability to participate in the activities she once enjoyed before the two spinal surgeries this past year. She was able to attend school only part time because her neck became very sore if she didn’t rest throughout the day. She has lost an entire grade because she missed so much school. Her parents knew corrective surgery and effective post-surgical therapy and care was critical immediately to remedy her condition and help this formerly vivacious nine-year-old girl enjoy the quality of life she once knew.
Madeleine's family had prayed since Madeleine’s diagnosis at birth to find a place for her to get the care Dr. Feldman offers. Tragedy led them to his door. They had no option but to choose the very best in health care for their daughter. His surgical techniques will enable Madeleine to live a thriving, independent and functioning life. Madeleine will no longer need multiple surgeons who only specialize in one area. This disease is connected throughout her body and presents most significantly in her whole core, which is Dr. Feldman’s expertise. Anyone who knows this extremely brave young lady will agree, given the chance, she will do amazing things. Her story has the potential to touch many and help other children living with this condition. Both Madeleine's former and present GPs, who have cared for her throughout her life, strongly support the family’s decision to seek Dr. Feldman’s amazing team. One of the physicians went so far as to donate $1000 to kick-start a fundraising campaign to give her a chance to get the help she so desperately needs.
It took courage and a huge leap of faith to take Madeleine to experts in Florida.
The surgeries and resulting deformity have taken a physical and emotional toll on the entire family. Madeleine’s self-esteem has suffered greatly. The stress that the Murray family have experienced this year is beyond what most of us can imagine. The nightmare will continue until they are able to fund Madeleine’s second surgery in December.
The Murray family is filled with gratitude for the outpouring of love and support they have been receiving.
Laura and I are, as always, happy to share with you our courageous daughter Madeleine Murray continually is getting stronger, as well as healthier in all aspects. Madeleine has been working very hard with her physio therapist and has gone through some very challenging exercises that has allowed her to accomplish some very rewarding goals for herself. We are also very excited to share with you there is a discussion taking place among her care givers about her coming home the beginning of March.
Last Sunday, Madeleine turned ten years old. It was a special day, as is for every child turning double digits. This day had a surprise for Madeleine. I was able to find a cheap flight to West Palm Beach which allowed me to wake up last Sunday morning near her, only to walk over to her bed, kiss her check and say happy birthday! Her birthday wish was for me to join her and her mom back in Florida to celebrate her tenth birthday. I could only stay for three days, but those three days were very special.
The picture of the roses are simply a father expressing their love and admiration for a daughter. The mix of colours flourishing among these sweet-smelling roses express the relationship I have been so blessed to share with Madeleine. The bond that has blossomed like these roses depicts our love for each other. Madeleine remembers me whispering in her ear, keep fighting Madeleine! Dad and mom are here beside you, while she was in a comma state those early weeks in PICU ward.
The picture of Madeleine sitting eating lunch was taken at a restaurant called Relish and More. We took her out to a favourite restaurant of a local in celebration of her birthday. I don't think I have to share with you if she enjoyed her meal, her face says it all. Having a chocolate milk shake with a straw that has an half inch diameter did not hurt either! The other thing we did on her birthday that was very enjoyable, we went to the movie Sing. Highly recommend to go with your kids, very well done, music was so amazing as was the theme of the movie.
The picture of Madeleine and that handsome fella is her hero! Dr David S Feldman. As you can see in the picture the two of them are having lunch together. Yes, it is a happy meal from the Golden Arches. This date was planned during the early days when she was in the PICU ward. I told Dr. Feldman that one day Madeleine and himself would share a happy meal together, that day will be special. Yes, that day was very special, singing, cake, tears of joy were shed. The two of them have a bond, both have given each other a gift to cherish forever. One of the greatest gift for Laura and I is knowing Madeleine is under the care of Dr. Feldman. He is one hell of a highly skilled surgeon, but something trumps that! Dr. Feldman best quality is simple he is an incredible person, this man possesses integrity, love, compassion, and cares for his patients like they are his own children. Many dinners at Quantum House were spent among other families discussing this salt of the earth man. The common feeling is, as you could probably guess, nothing but being grateful to this incredible individual.
The picture of Madeleine with the group of nurses and doctors were just some of the care givers we spent five and a half weeks with. This group of people are just a few that Laura and I adore and are eternally grateful too. We prayed with them, cried with them, worried with them, finally rejoiced with them. This picture was taken the last day before I had to come home. It was taken during a two hour visit that is forever memorable for Madeleine and me. Just amazing moment to wheel her in the very ward she fought for her life and be greeted by this beautiful group of people. They are our heroes as well. They gave her a second chance, I know for a fact they glow with pride knowing what they accomplished for her. That is the gift back for all of them.
The last picture of Madeleine with the lady kneeling beside her is a very special person as well. Gabrielle is her name, she is the CEO of St Mary's Hospital. Gabrielle walks with grace, class and dignity. When I look at her I see a person who represents this community of care givers so accurately. This picture was taken just after Madeleine and I walked out of the board room down the hall. Madeleine and I were invited to share a snapshot of her journey from Canada among the Board of Directors. There was well over fifty people in the room representing their departments. They all stood up and introduced themselves to us. One lady stood up and said she was in charge of Quality Control, I could not help myself, I commented there was no shortage of that sitting here today. The opportunity to share our journey, the opportunity to say thank you to all of them was arguably one of the most rewarding moments in my life. After Madeleine and I spoke she was given a standing ovation.
This opportunity was not planned, Madeleine and I were trying to find our way out of the hospital after visiting the PICU ward, but due to some construction, we had to take a different elevator. We ended up on the administration floor. Well I thought, maybe it was our chance to go and say hi to Gabrielle, Madeleine enjoys giving sand necklaces, plus I could thank her again with Madeleine present. Gabrielle came out of the meeting and asked us to come back in with her to the meeting. What took place after was simple meant to be. As Madeleine and I were leaving the hospital, the overwhelming gratitude in my heart was radiant as the sun shining upon our courageous daughter being wheeled in front of me. I realized Florida was always meant to be, best decision Laura and I ever made. Florida was waiting for our Madeleine to come one day, the two hours just spent with the people shown in the last two pictures unequivocally confirmed those feelings. Not only has Madeleine's health been re-stored, her spirit has been enriched, her heart filled with love my so many. The past ten years of her life have been overwhelming at times for her. I always thought Florida just maybe nurture her also, maybe start to heal the emotional toll she had to bear this past year. That also was confirmed, the love and admiration towards her found a way into her heart, I just know it.
Thank you for allowing Laura and I to share these three days. This story has gifts for all who wish to invite into their hearts. That part of the story is also meant to touch so many. This child has come to make a difference in our times of strife we all navigate through. It is has been an absolute honour to share this journey with you all thus far and the end is in sight. Yes, Madeleine is our daughter, but her spirit is yours to cherish, that is her gift back to all of you who helped this beautiful child complete her destiny. For those who may be, I am shedding a tear as well!
Many regards from the Murray family in Florida as well as home.
Laura and I would like to apologize for not updating Madeleine's progress in some time. The past three weeks have been very busy as Sutherland and I packed our bags, it was time for the transition back into our home life. This part of the journey has also been full of emotion, leaving the girls in Florida was not easy. Sutherland and I both needed to come home to re-assembly our former lives. Madeleine had her ten week check-up yesterday. Laura and myself both had anxiety about this appointment for the past week. I wanted to do the update after that appointment. This was a physical check-up which included x-rays of her spine. We were confident that everything was going well but having lived the disastrous results from her two failed surgeries at home. Having just freshly lived through the fight of her life this past couple of months played on our minds. Laura and the rest of my family are so relieved, everything checked out fine. Madeleine is continually getting stronger as she attends physio three times a week along with some pool therapy. The close-up picture of her was taken yesterday after she and Dr. Feldman shared a lunch together. This was a special lunch the two of them enjoyed together. I will share with you further about their time together this weekend as Madeleine turns ten years old on Sunday.
Before Sutherland and I boarded a plane to come home a week and a half ago, our last day spent together was very neat! The last outing we all shared together as a family was a visit to the Manatee Park. The park is only about ten minutes away from Quantum House. The park is located in the inner coastal waters of West Palm Beach Florida. This is a very unique place for some very unique creatures. The picture showing the American flag along with the buildings in the back ground is the Florida Power and Light Company. To create electricity, the plant heats up water resulting in steam. The steam then spins massive turbines that generate energy. Apparently after the steam is cooled from the water taken from the lagoon, that same water is then returned to the lagoon. The returning water has a higher temperature than the sea water outside of the lagoon. As a result of this process, the Manatee's have their very own hot tub. Other fish can also be seen swimming in the lagoon as well as the odd shark cruising effortlessly among these gentle mammals. An interesting fact about sharks sharing these waters with the Manatee's is that these fierce predators do not bother with them nor their calves. The day we were there the Manatee count was about forty five. They love the warm water that this quiet refuge has to offer. It is also a time where they mate, not having to worry about boat traffic gives them a higher chance of success that future Manatees will be conceived. The lagoon also allows the calves to socialize in a safe setting. We had an opportunity to chat with a Manatee conservationist who was snapping photos of the community of Manatee's swimming below us. I asked about her role in the well-being of these interesting creatures. She told us she was part of the rescue team, her job along with her colleagues was to rescue and rehabilitate the manatees if they got into trouble. She pointed out a couple of them that they had to rescue and re-introduce back to the ocean after their medical needs were addressed. She could identify them by the markings on their backs which mostly have been caused by being hit by boats. She had names for the two of them that she identified to us. Very similar to a marine biologist tracking and identifying Killer Wales in a pod among our local waters. This occurrence of the Manatee's gathering together at the lagoon only happens for a short time every year. When the weather turns cool this time of year down in Florida the migration to the lagoon begins.
I mentioned earlier it was not easy for Sutherland and I to leave Florida. It was time, we both have jobs waiting for us back at home to do. Sutherland's return to school was going to be mixed with many different aspects. He basically has one year of school work to mostly comprehend in half a year. The welcome he received from his teachers and other staff members along with his friends was very special. He was greeted with warmth along with nothing but smiles plus re-assurance he was going to be supported in re-joining his classmates. It was a very special day when we came to his school, to be so cared for from such amazing group of people at St Joseph's School certainly caused some watery eyes among Sutherland and I. Putting your life back together after being away for three months along with making peace with the battle you just went through has its adjustment. We rounded up our pets from dear friends of ours as the house felt so empty without them. Madeleine's good friend Camryn took such great care of her Guinea pigs, my longtime school friend Glen and his wife Kelly looked after our Golden Retriever Logan. Madeleine and Laura are among a community of such caring salt of the earth people in Florida. She is in such good hands by so many that it does help being apart three thousand miles away. Madeleine will be allowed to come home end of February if things continually progress well in her recovery. She very much wants to come home.
Thank you once again for all the warmth Sutherland and myself have received from the people we have been able to catch up with since we have been home.
Thank you to all of you once again for being so supportive in our daughter’s journey. I have said it a hundred times, but it never feels different, without all of you she would not have had been given such a bright future to look forward to. Madeleine's journey is your journey too, I hope you can enjoy this story for many years to come knowing what a difference you have all made to this courageous young lady!
Much regards from the Murray family.
This update, Laura and I wanted it to be different as far as who we talked about in their own personal journey down here in Florida. Our son Sutherland Murray as I posted a couple of days ago, turned thirteen on Friday. We feel it is important to recognize his experiences as well and share a bit about him. Some may have wondered about where his name came from? He gets complimented on his name down here quite a bit, people ask if he was named after the two famous gentlemen working in Hollywood? No, he would kindly reply, my name is a family name. The name Sutherland is my middle name, a surname in our family tree. The name came from my father's side of the family, my mom Shelia, cherished my great Nana so much that she decided it would be special to her to have it as my middle name. My brother Cameron suggested to Laura and myself that it would be a great name for our new baby boy about to be born on that Jan 6th/2004 day.
The reason I wanted to share some thoughts about Sutherland is because this journey down to Florida has had a life changing effect on him as well. As you know he has been residing with us this past two months, navigating his way through Madeleine's medical needs too. It has been important to understand through his lens how he has coped, how has he dealt with the stress he witnessed his mom and dad go through? Sutherland has been a part of Madeleine's journey his whole life too. He had to cope with some very difficult times over the past ten years. There have been times where yes we were physically with him, but not emotional there as we logged many hours trying to enhance Madeleine's future. There certainly have been losses that Laura and I felt through his childhood, times we have missed out on, I assure you he would say the exact same thing but rarely has complained. Laura and I both did everything we could these past ten years, keep him emotionally thriving, provide a stable home for him to flourish in. I feel overall this was achieved, as every parent knows you try your best, some things you wish you could replay certain time frames, but that just not reality. The one thing we could do among the thirteen surgeries Madeleine has had to endure was we invested as much love as we could muster up for him. Being a sibling of a special needs child is something Laura and I can't say we understand because we had simply never experienced this in our childhood. Madeleine being cognitively well has certainly made a big difference for Sutherland when it came to building a bond with his sister. Physically he has not had his sister be able to participate at times, which has been a bit disappointing for him through these years, but has adjusted at times to make it work.
Sutherland's past two months living at the Quantum House down here in Florida has been very interesting for him. This young man has had to look within his own tool box, labelled life skills. The life skills he has acquired over the past ten years living with his sister challenges were within him, he had to unlatch that tool box. The tools that lay before him represented a life skills needed for the past two months under mostly his own guidance. He did not have his parents company much at all at times. He looks like a big kid, being as tall as his mom, but he still just a boy who needs reassurance just as any pre-adolescent child needs. Sutherland was supported by the Quantum House community. He was taken under the wings of some very special people. He was not coddled by any means, just re-assured that he was being looked out for and included in activities. That was all he needed, off he went opening himself up to all these children from around the world that have come to Florida hoping to be able to improve their own physical challenges. Sutherland became a big brother to many of these beautiful souls. When Laura and I would come back from the hospital for dinner he would tell us how his day unfolded with the kids as well how he looked after himself. While Madeleine was going through the battle of her life he did his part allowing us to focus on Madeleine. Sutherland knew she was in tough, we had to be honest with him when her future was in the balance. He found a way to cope among the special people at Quantum House. We as parents try and protect our children from adversity, that is our natural instinct. But, I can guarantee that is not always possible. The only advice I gave him was for him to remember the younger ones will look up to you, I trust you will look out for them as you would for your sister. The years spent with Madeleine's challenges allowed him to become such a positive experience for these amazing children. I don't know if the Quantum House has seen so many RC cars zooming around the open hallways before, but that was Sutherland's gift to these children. A simple twenty five dollar remote car had allowed them to have fun together, age, capability, gender, language barrier did not matter at all. Simple enjoyment among them all.
Sutherland said to me yesterday in the car, "Dad I think adopting children is a good thing, many kids in this world need a good home".
I didn't say anything at first, I was overcome with admiration for him, I realized what our son truly experienced, these past two months had a profound positive impact on his life. Maybe his journey will alter him somewhat because of this brief time in his childhood living at Quantum House in Florida. The first picture of him looking out towards the vast Atlantic Ocean is basically the same spot I dreamed of the day when Madeleine's health would be restored by getting her to Florida. Laura and I hope as he looks out to the open ocean that he sees his life will be rewarding as much as his parents have been being blessed with a child with special needs and the gifts she has brought us.
The picture of him with those children is his happy place, he usually comes to the room after the three of us have gone to bed sharing how much fun he had with the community of children.
Every child is special, some children have challenges that need much of their parent’s attention, but sometimes when we have to let go, trust our children will embrace the values we have engraved in them. Sutherland will be boarding a plane this coming week to re-join his classmates and back to his home life. There is no doubt he has a lot catching up to do academically, if there is one thing we did not achieve well was that part. On the other hand, the experience that he has been exposed to in Florida from so many people is something truly special. In retrospect bringing him down here for the past couple of months was the best thing that could have happened to him as well as us. Not only did we witness Madeleine make a complete transformation in her health, Sutherland also received wonderful life experience and only he knows in his heart where it may lead.
Without all of you, this also would never have been possible either. Forever grateful!
Thank you for allowing us to share Sutherland's journey as well.
Much regards from the Murray family in Florida.
We have had family and friends ask us if we are okay after the airport shooting in Fort Lauderdale. We decided a couple of days ago that Suds and I would not travel today. It is Sutherland's 13 birthday today!
I thought we would stay until next week to help Madeleine get further on her feet and spend some much-needed time together not under stress. She is coming along nicely. The pics shown were of the lion safari park which we went to today compliments of Quantum House. Maddie and Suds had a very good afternoon seeing the African animals roaming wild on this extensive park acreage. Very neat place.
Thank you very much for the concern about our safety. We are safe and sound. I have an update coming in a day or so on how we have been doing in Madeleine's ongoing recovery and some thoughts on other experiences we are having.
Regards from the Murray family in Florida.
The Murray family would like to thank you all one last time before we board the plane this afternoon and start our journey. We have so many people to thank for making this possible. I wish I could list everybody but I would run out of space. The overwhelming support in the community has been remarkably. The generosity has been so moving and cannot thank you enough. Madeleine demeanor has been so positive this past week for she can feel the love and support, she is so grateful to all of you. Thank you to Travis for running Madeleine's story in the Saanich news this weekend, it was so well done. That picture of her in the red jacket is a picture my wife and I have looked at so many times over praying that beautiful smile will once again come back. We all have our own struggles that we have to face, and feel alone sometimes. I hope that picture of the little girl in the red jacket standing under the maple tree with her purse among the maple leaves has been able to touch you in a way that she can inspire your own heart. Just the simply act of so many people sending prayers and well wishes has given this soul so much. MSP has denied us but we are going to make it. I cant explain it, but I just know it will all work out, things happen for as reason and this road less traveled in our daughters young life has prepared us for this path. We the Murray family wish you all a wonderful thanksgiving weekend and health and wellness to your own family's. We will face book our journey with Madeline with pictures and stories. I had mentioned this before that it is my birthday on Monday, that is the day Dr Feldman and Madeleine will meet and I suspect many tears will flow. I could not have asked for a better birthday present than that, miracles do happen! Thank you for being apart of it! Much regards from Laura, Dan, Madeleine and Suds
Merry Christmas to your beautiful daughter and your wonderful family! I have been so inspired reading all of the updates! I hope to one day have the privilege of meeting you upon your return to Victoria! Christmas is about love and as long as you are with your loved ones you will be in the Christmas Spirit! Continuing to pray for complete healing for Madeleine!
Hi Dan & Laura, We have been reading and watching with daily thoughts and prayers for Madeline. What a journey this has been for all of you, and will continue to be. So glad to see she is through the worst of it, and looking forward to watching her become fully agile again! Your daughter is such a bright light, as you say, and that is not lost on any of us who miss her at her old school. Please watch for a small care package in the mail as Griffin and his brother wanted to send her some things to lift her spirits during recovery. Sending love from the motherland! Sam Agar
Danny and Laura, my thoughts and prayers have been with you both . You have a special brave daughter who is making her way back to you after her big operation. Wow. You have lots of love supporting you all. So happy to see the donations coming in to help you, you will make it! Thanks for all the updates. Susan
What and amazing family you are! The strength, faith and courage you are all showing not to mention the incredible love you have for each other is such a gift to us all. We can all learn from this incredible challenge you have faced. My very best wishes for a full recovery Madeline, and some very well deserved rest for you Laura, Dan and your son as well. I look forward to you all coming into our store in the Bay Centre sometime in the New Year to give you all a hug.!!!
I don't even know what to say-You have been through so much - thank you for the update - we think of your family and say a prayer for Madeleine every day- so glad that she is getting stronger and has such a wonderful team looking after her down there !!sue
Laura and I would once again like to give a special thank you to our family on both sides for being so incredibly supportive and sending so much love. Madeleine truly feels the love you all have been sending her and she is determined to make you all so proud of her. I would also like to give a big thank you to a very dedicated group of people that have come to her cause behind the scenes. Their dedication in bringing the story of the little girl in the red jacket to so many people that do and don't know her as well as presenting her story with such grace, class, and pride is so moving. Madeleine has been able share her journey in her own expression which has been so powerful for so many following her along. Madeleine's many well wishers have been able to take part in her journey and feel they are part of her healing which I could not agree more. Your pure dedication and the shear determination to see this through for our daughter is just a true blessing for us! Lynne Maples, Jessica Maples, Cathy Duncan, Darrell Smith, and finally Peter Klassen are the individuals that have given up much of their time for this courageous young lady. If I looked up the meaning of devotion, I suspect I might find your names under that heading somewhere. Laura and myself never thought in our wildest dreams that this journey would touch so many and have such overwhelming support for our leap of faith we embarked on October 8th! If your heart has absorbed a touch of her spirit we a truly honored for that and I hope you can share this gift and bless another child in need someday. One day Madeleine will be there along side you giving back and instilling hope to those children. Miracles happen, tell them to look up the story of the Little Girl In The Red Jacket! Much regards from the Murray Family.
So happy to hear Madelaine is doing so well! What a strong daughter you and Lauria have raised. Do I dare say what a beautiful looking girl you have, even if I see so much resemblance of you? You and Sutherland will be counting the days till Feb. and Madelaine comes home.
So wonderful to see Madeleine out and about with her family on a beautiful day!!
Thank for your story of a Christmas miracle. God is great. Madeleine is courageous beyond our belief. What a resilient family you are! We are so inspired. Our love, prayers, and best wishes for the New Year to all of you in Florida.
So wonderful to follow Madeliene's journey! Darrel Smith shared her story with me a few weeks ago. I was wondering about the sand necklaces? Are there more available? Praying for continued success with surgeries and complete healing for your precious daughter.
Oh my goodness Madeleine, you look like a new person. So lovely to see you smile. Congratulations on your progress.
What a beautiful smile! Keep up the good work. Well done!
Wishing Maddy and family all the best. We,ve been there and empathize with you dilemma. Thinking of you Jeneece and family
Wow -- so beautiful to see your wonderful progress, Madeleine. Love the costume and smile on your kitty cat face. Happy Halloween!
Wow! She looks wonderful, love her costume. So glad to see her happy. Will you get updates and pictures? It is heart warming to see the progress. Thanks for sharing.