In a house on Mendenhall Pennisula, soft guitar music plays and a visiting baby gurgles his words and happily crawls on the floor, getting into things he shouldn\u2019t like most babies. At 10 months old, Sylas Stutz has no trouble standing by holding onto furniture.<\/p>\n
But unlike most babies, Sylas may lose one of the feet he\u2019s just now learning to stand on.<\/p>\n
Sylas was born with the fibular bone in his right leg 9 centimeters shorter than his left, and his right foot is missing two toes. To keep the foot will require years of painful, and costly, surgeries to lengthen the bone in his leg. Diagnosed with fibular hemimelia, a 1 in 40,000 chance, Sylas faces medical complications if his rare limb defect goes untreated.<\/p>\n
Wrangell resident Krysta Gillen, 19, took her son Sylas to Shriner\u2019s Hospital for Children in Portland, Oregon, when the doctors in Southeast Alaska couldn\u2019t diagnose his condition. She had previously searched online with the help of her sister, Sara, for the answers to his limb defect. Fibular hemimelia matched Sylas\u2019s condition, so the official diagnosis wasn\u2019t much of a surprise. What was a surprise was the recommended treatment.<\/p>\n
\u201cWhat they mostly suggested was amputation\u2026 just leave his heel and cut the rest of his foot off and put on a prosthetic,\u201d Krysta said. \u201cThey said he would be able to walk around without the prosthetic on his heel … when he\u2019s not doing things he needs the rest of his leg for. They said that it would be quick and easy and painless. … I don\u2019t see that being an option.\u201d<\/p>\n
Krysta learned about an alternative option to amputation called limb lengthening. The doctors at Shriner\u2019s were hesitant to recommend it, however. The lengthening \u201cwould last till he is 20 or so,\u201d Krysta said. \u201cIt would be a painful process and obviously we would be going back and forth for surgeries.\u201d<\/p>\n
She said there was also the option for reconstruction surgery to be done on Sylas\u2019s foot to stabilize him when walking if limb lengthening was done.<\/p>\n
However, Krysta said she was told if Sylas underwent limb lengthening, he would be psychologically damaged from the experience. To make matters harder, her only insurance is Alaska Medicaid. If she went with the limb lengthening procedure, she faces the potential of hundreds of thousands of dollars in medical and travel costs. <\/p>\n
To pay for the best possible treatment and care, Krysta set up a Go Fund Me campaign for her son Sylas.<\/p>\n
\u201cShriners is a great hospital but they\u2019re not experts in Sylas\u2019s condition.\u201d Krysta said. \u201cI don\u2019t think I could ever imagine taking Sylas to Shriner\u2019s to get his leg lengthened,\u201d said Krysta. \u201cI don\u2019t think I could ever get (his foot) amputated, … He\u2019s got his toes, a perfectly good foot.\u201d<\/p>\n
With much to think over, Krysta returned to Wrangell to consider her options. What she really wanted was a second opinion on Sylas\u2019s condition so he could receive the best possible treatment.<\/p>\n
Krysta\u2019s sister found a Facebook page dedicated to fibular hemimelia, and the second opinion Krysta wanted \u2014 the Rubin Institute, a part of Sinai Hopsital in Baltimore, also called the International Limb Lengthening Center. The doctors there have performed thousands of limb lengthenings and are considered the leading experts.<\/p>\n
Many people on the Fibular Hemimelia Facebook page, Krysta noted, took their children to the Rubin Institute. On that page, Krysta learned about a Southeast Alaska family who had gone to there for the same procedure Sylas needed. <\/p>\n
<\/p>\n
Meet Keagan<\/strong><\/p>\n While most people were counting down the minutes until the New Year on Dec. 31, 2014, Sue Walker had just managed to get her son Keagan, 16 at the time, to Sinai Hospital to undergo his 20th and final surgery to correct his proximal femoral focal deficiency, also a rare limb defect.<\/p>\n For them, it was the eve of a new chapter in Keagan\u2019s life. He wouldn\u2019t have to take frequent trips to Baltimore for treatment, and wouldn\u2019t have to spend time in a wheelchair, cast or using crutches. He wouldn\u2019t have interrupted school years, receive stares from strangers, awkward questions from classmates or have to go to the bathroom with the school nurse, like when he was in a cast from chest to feet.<\/p>\n His femur, which had been nearly 19 centimeters shorter than the other at birth, was now as long as his right leg due to the procedures. The long trips to Baltimore, the surgeries, therapies and stresses involved with correcting Keagan\u2019s proximal femoral focal deficiency would finally be over.<\/p>\n Before his last surgery, Keagan was able to bike from his house on Mendenhall Pennisula to the West Glacier Trail, climb Mount McGinnis, hike back down, bike home and then go to work at the Rock Dump, where he also likes to climb. He has use of his own leg and foot, and puts it to good use thanks to the treatments.<\/p>\n After Keagan completed his surgery, he wanted to give back and help other children receive the same opportunity to receive treatment as he did. He participated in Save-A-Limb\u2019s fundraiser this year and raised $1,620. The organization uses the money to fund travel and medical procedures for those who may otherwise be unable to receive treatment, like Sylas.<\/p>\n He also shared a personal essay he wrote about living with proximal femoral focal deficiency on the rare limb defects Facebook page. \u201cI put it on there so they could see why their kid would go through all this,\u201d Keagan said. \u201cI know people who can do amazing stuff with a prosthetic, but I can do amazing stuff with my leg. I did all this to keep that leg.\u201d<\/p>\n A day before Keagan and Sue were in Baltimore for Keagan\u2019s final operation, Sylas was born at Bartlett Regional Hospital. Though the two share similar limb defects, their families don\u2019t have the same financial means for treatment.<\/p>\n When Sue met Krysta over Facebook, she wanted to help the young mother who faced a hard road ahead. Sue knew all about the cost, the operations required and being the one to make the difficult choice of which treatment to consider. <\/p>\n When Krysta came to Juneau with Sylas for a medical appointment, the Walkers opened their home and the two families met for the first time. In the Walker home, the group sat down for an extended interview to talk about their experience with rare limb defects, possible treatments for Sylas and financial constraints in tow.<\/p>\n Both Sue\u2019s and Krysta\u2019s experiences were similar in that neither of them knew their children had a rare limb defect until after their babies were born. Rare limb defects such as proximal femoral focal deficiency and fibular hemimelia are non-genetic disorders, and doctors do not know what causes it, only how to correct it.<\/p>\n Sue explained just what limb lengthening entails. <\/p>\n \u201cFirst there\u2019s the extraction phase where they\u2019re pulling the bone apart, put in more bone and that takes about two to three months,\u201d Sue said. \u201cThen there\u2019s the consolidation phase because that bone is very soft, it\u2019s like toothpicks. So the fixator, or the lengthening rod, stays in because that bone needs to harden. Then there\u2019s the recovery phase where you have to regain your range of motion and strength. So the whole process takes year.\u201d<\/p>\n The amount of time this is repeated differs between individuals, Sue said.<\/p>\n \u201cIt depends on how much length you need to make up,\u201d she said. \u201cIf Sylas is only 9 centimeters, well, that\u2019s providence. That\u2019s probably no more than two lengthenings, maybe one. Keagan\u2019s was almost 19 centimeters. When he was little he would need three or four (leg lengthenings). His ended up being just three. He also had to have 20 separate surgeries due to his condition.\u201d<\/p>\n Seeing Keagan as a young adult helped Krysta decide what she wanted for her son. Now she just needs to find a way to pay for it.<\/p>\n \u201cAt first I was scared going to Shriner\u2019s, when they said it would be really painful and he would be in pain all the time,\u201d Krysta said about the lengthening procedure. \u201cBut now I\u2019m meeting Keagan, … it was inconvenient having to leave all the time and it\u2019s kind of painful going through surgery, but he doesn\u2019t regret it and he\u2019s happy.\u201d<\/p>\n For Krysta, learning about Keagan\u2019s success with limb lengthening and seeing firsthand how he has use of his leg to go skiing, rock climbing and biking, gave her some peace that going to the Rubin Institute would be the right choice.<\/p>\n \u201cIf I had the money I would just get on a plane … and go for it,\u201d Krysta said. \u201cBut that\u2019s not really an option.\u201d<\/p>\n Financial challenges<\/strong><\/p>\n Krysta already knew that going to Baltimore just to receive a consultation would be expensive. Krysta said she got quoted $800 for an initial consultation. But there are other costs to consider.<\/p>\n Sue said that with travel expenses such as airfare, car rental, lodging and food, the doctor\u2019s visit would be closer to $3,000 to $3,500. And that doesn\u2019t include the limb lengthening procedure or other surgeries needed to correct Sylas\u2019s fibular hemimelia.<\/p>\n Krysta graduated high school and is now a full-time stay-at-home mom to care for Sylas. Her boyfriend, Sylas\u2019 father, works in construction building roads, frequently traveling for work. Their medical insurance is through Medicaid and it won\u2019t pay for procedures at Sinai Hospital. Sue knows this as well; Medicaid would only pay to fly her and Keagan to Baltimore and back, nothing else. <\/p>\n The overall cost for covering limb lengthening can be a hefty amount. For Keagan\u2019s surgeries, it was huge.<\/p>\n \u201cI figure he\u2019s got a million dollar leg,\u201d Sue said of Keagan, accounting for all medical procedures, therapies, travel costs and other miscellaneous expenses such as modified shoes with a built in lift to make up for the height discrepancy while his left leg was being lengthened.<\/p>\n Sue, who now has better insurance from her job as the regional hydropower coordinator with the National Marine Fisheries Service, said their insurance still only covered about 90 percent of the total cost. She and her husband, Dr. Vic Walker, a self-employed veterinarian, paid about $100,000 out of pocket.<\/p>\n \u201cOther people are going on vacations, they\u2019re saving for college and we\u2019re buying a leg,\u201d Sue said. \u201cIt\u2019s worth every penny, and he uses it well. But it\u2019s expensive stuff.\u201d<\/p>\n Sue said she and Keagan stayed in one lodging right across from the hospital, and though it was subsidized, it was still fifty dollars a night. <\/p>\n \u201cWhen you\u2019re there for three or four months, that\u2019s a lot.\u201d Sue said. \u201cOur last lodging bill was $6,500.<\/p>\n \u201cWhy should Keagan get these treatments and Sylas doesn\u2019t? Just because I have insurance and you don\u2019t?\u201d she said to Krysta. \u201cIn one of the most developed countries in the world \u2026that\u2019s not fair.\u201d<\/p>\n The alternative treatment, amputation, is not without its costs, according to Sue, who pointed out that children grow and continually need a new prosthesis. Also, children need a variety of shoes for day-to-day life, which also must be changed as they grow \u2013 gym shoes, rain boots, snow boots, tennis shoes, etc. Each pair must be made by a cobbler, which becomes a huge expense over time.<\/p>\n Amputation isn\u2019t an unusual procedure to deal with limb defects, however.<\/p>\n In an interview done with Medical Breakthroughs, Dr. Dror Paley, a surgeon who specializes in treating rare limb defects, said that amputation has been a common treatment for fibular hemimelia. Amputation is seen as a simple solution because it requires one surgery, and a prosthesis can be replaced to accommodate a growing foot.<\/p>\n \u201cMost orthopedic surgeons can reliably do an amputation,\u201d said Dr. Paley. \u201c\u2026The problem is most pediatric orthopedic surgeons might see one or two of these types of patients a year. That\u2019s not enough to get good at (leg lengthening), and yet, to be good at amputation doesn\u2019t take a lot of experience.\u201d<\/p>\n Dr. Paley also said he and his team \u201cfound no adverse effects of the lengthening on their (patients\u2019) psyche. While it a challenging process, these challenges actually enhance patient confidence while teaching patients to be goal oriented.\u201d<\/p>\n <\/p>\n Weighing the options<\/strong><\/p>\n Sylas not undergoing either treatment isn\u2019t a realistic option. Besides having a leg that is nine centimeters shorter than the other, which already would make walking difficult, Sylas has an unbalanced foot. Over time, he could face serious medical complications.<\/p>\n According to the Save-A-Limb Fund, the non-profit created by the Rubin Institute to help children with limb defects, \u201cone in 125 children is born with a limb deficiency and many others suffer from limb deformities. Some children undergo amputation because they do not have the resources to travel to a specialist and pay for limb lengthening or reconstruction surgery. Over time, many people\u2019s joints wear down creating painful conditions that make simply walking to the door an excruciating task. Whether from degeneration, arthritis or injury, some people are unable to receive treatment because they cannot afford the cost of surgery or physical therapy.\u201d<\/p>\n After Krysta returned to Wrangell, she participated in an online group chat hosted by Dr. Shawn Standard and Dr. John Herzenberg of the Rubin Institute to discuss Sylas\u2019s condition. The doctors told her they would provide a free consultation if she could make it to Baltimore to determine the best treatment option for Sylas. He wouldn\u2019t have to come in until after he\u2019s one year old, and wouldn\u2019t have surgery until he is three. Based on the x-rays Krysta provided, the doctors confirmed Sylas only has moderate fibular hemimelia and will need some of his leg lengthened but mostly reconstruction on his ankle and foot for proper support.<\/p>\n After Sylas\u2019s birthday Dec. 30, Krysta wants to take him to Baltimore to receive a detailed medical plan on all the surgeries and treatments he will need to move normally on his own foot.<\/p>\n With her Go Fund Me at $2,750 Krysta will be able to go to Baltimore for the free consultation offered by Standard and Herzenberg. With a $30,000 goal, anything more she receives will go to medical costs and other expenses.<\/p>\n \u201c … I was told in the hospital that they have kids whom they amputate all the time. They run and play and walk and do everything with their prosthetic,\u201d Krysta said. \u201cI just couldn\u2019t imagine doing that.\u201d<\/p>\n \u2022 Contact Clara Miller at 523-2243 or at clara.miller@juneauempire.com.<\/p>\n To make a donation<\/strong><\/p>\n Sylas\u2019s Go Fund Me page, \u201cSylas\u2019s Lucky Fin Project,\u201d can be found at: www.gofundme.com\/pz4zw4pc.<\/p>\n For more information on Save-A-Limb and to donate visit savealimb.org.<\/p>\n","protected":false},"excerpt":{"rendered":" In a house on Mendenhall Pennisula, soft guitar music plays and a visiting baby gurgles his words and happily crawls on the floor, getting into things he shouldn\u2019t like most babies. At 10 months old, Sylas Stutz has no trouble standing by holding onto furniture. 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