courageous stories by gjjur4356

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									                                                                                                             By Kiran Dodeja Smith




                   desperate
            hope
      Caring for a chronically ill or disabled child is heartbreaking and humbling. Three local families share their



         courageous stories.
        How do you react when you see a child with a disability? Do you turn away, hoping you didn’t stare too long?
                        Do you silently give thanks that you’re not the parent of a child with a serious illness?
         It’s likely that within the next five minutes the thought of that ill child will completely exit your mind. You go on
        with “life” as you know it. And all the while, life continues for the family of a child with a disability – though their
                                       definition of lifestyle is probably very different from yours.
         Caring for a child with a disability or disease – whether it’s lupus, diabetes, cerebral palsy or epilepsy – disrupts
     life in a variety of ways. Parents still must manage everyday tasks: working, making meals, nurturing and caring for
        kids. But there are also physical challenges, medical needs and emotional issues to address. At the end of the
           day, parenting a child who is sick or disabled can be an extremely emotionally draining and difficult task.



     The Diagnosis                                                    self. The pediatrician chalked it up to Jake “just being a bit
                                                                      slower” and believed that he simply had a benign low muscle
      Emily and Michael Pritchard, parents of 3-year-old son Jake     tone condition. The Pritchards started Jake in physical thera-
     and 1-year-old son Ben, have just recently begun their battle.   py in hopes of improving the situation.
     Just months ago, their eldest son was diagnosed with               Jake appeared to be hitting his milestones, army-crawling at
     Duchenne muscular dystrophy.                                     9 months and walking at 14 months, but when he was about
      “Everything seemed fine at birth,” Emily says. Jake was a       18 months old his physical therapist suggested an MRI to see
     happy, healthy, 9-pound, 3-ounce baby. “I did fear that he       if he had any neurological problems. She suspected cerebral
     didn’t seem as active or mobile as others his age, but Michael   palsy and thought an MRI could rule it out. Indeed, the MRI
     told me not to worry, that I was just being a worrisome,         came back normal. The Pritchards thought they were out of
     obsessive mom,” she says.                                        the woods and decided their son was just uncoordinated. “I
      Around the age of 8 months, Jake started falling over from      thought that he had inherited uncoordinated genes from me or
     the sitting position quite often and was unable to catch him-    Michael,” Emily says. Doctors and therapists assured them


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                                        their little boy would be   anywhere from 18 months to three years longer than without.
                                        up and running like his     “We can already notice a difference,” Emily says. “He can
                                        peers by age 3.             ‘run’ faster, jump and has more energy than he ever has since
                                          Jake continued on with    beginning the medication.”
                                        physical therapy and          Focusing on the positive has become a necessity for the
                                        also began occupational     Pritchards. Emily’s parents live in the area, and they are grate-
                                        therapy. He seemed to       ful for the support they’ve received from both family and
                                        be progressing just fine    friends. Cincinnati Children’s Hospital has also been over-
                                        – and it wasn’t until       whelmingly wonderful; various related charitable organiza-
                                        right around his third      tions have stepped up to provide a private jet to transport the
                                        birthday that things took   family to their appointment and have offered hotel rooms for
                                        a turn for the worse.       the family during their stay.
                                         The boy’s teachers           Emily and Michael were astounded by how severely under-
                                      began expressing concern.     funded research for DMD has been. They have since begun a
Jake was still falling over and he was still not running. At        quest to help the fight to find a treatment for their son’s dis-
their pediatrician’s recommendation, the Pritchards went to a       ease. In just one week they raised $7,000. They will continue
new physical therapist, who pointed out that Jake had a posi-       their fight against the illness while pressing on to provide the
tive Gower’s sign – a particular way of getting up off the floor    best for both of their kids.
that indicates a severe weakness.                                     “It’s made us so much more appreciative of every day,”
  Suspicions of muscular dystrophy arose, and doctors gave          Emily says. “We don’t let the little things get in the way any-
Jake a creatine kinase (CK) test. Results confirmed their fears.    more.”
Normal levels of CK fall under 200; Jake’s were over 15,000.
Further DNA test-
ing revealed that
                                                                    The Ongoing Battle
Emily and                                                             While the Pritchard family is just
Michael’s son                                                       beginning their struggle with a dis-
had Duchenne                                                        ease, Elizabeth and Nils Martinsen
muscular dystro-                                                    have been fighting long enough. To be
phy [DMD], the                                                      exact, it’s been over a year, and they
most severe type                                                    are hoping the journey has finally
of MD and the                                                       come to an end.
most common                                                           In December 2006, the Martinsens
fatal genetic dis-                                                  were a happy family of four with a
order among chil-                                                   fifth member on the way any day.
dren. That was just months ago.                                     Their daughter Victoria had been
  “Devastated can’t even begin to explain how we felt with the      feeling tired and had been experiencing
diagnosis,” reflects Emily. “It was the most devastating and        a lot of stomachaches. Her parents brought it up to their pedi-
hopeless feeling ever.”                                             atrician at her 4-year-old check-up, but basic blood work came
  Without hesitation, they began furiously researching the dis-     back normal so they brushed their fears aside.
ease. The facts they uncovered were heartbreaking. Between            By the time Christmas rolled around, Elizabeth had given
the ages of 8 and 12, a child with DMD generally loses his          birth to baby Niklas – and Victoria was still not well. She was
ability to walk. DMD affects all voluntary muscles of the body,     not hungry at mealtimes, had a tough time using the bathroom
including the lungs and heart, and because of this, survival        and had developed a fever. A trip to the ER uncovered noth-
past the early 30’s is rare.                                        ing and they concluded the culprit was a virus. But the follow-
  However, Emily’s research also unearthed some positive            ing week, Victoria slipped down two stairs and screamed in
information. The Cincinnati Children’s Hospital, known as           agony. It didn’t take more than a second for Elizabeth’s
the “St. Jude” for children with DMD, houses one of the ill-        “mother’s intuition” to tell her this was anything but
ness’s leading specialists, and Emily immediately reached out       ordinary.
to her. Nationally renowned neurologist Dr. Brenda Wong is            The Martinsens took their daughter, who was now limping,
known to be very cutting-edge with her treatments and clini-        to a chiropractor who worked on adjusting her hips for a
cal trials for DMD. Not 15 minutes after Emily e-mailed her,        week. But after a week the problem remained, and the
                                     Dr. Wong called her.           Martinsens went to see an orthopedic specialist. A side X-ray
                                       The Pritchards are anx-      showed that two of her vertebrae had collapsed.
                                      iously awaiting their           From there, things moved quite quickly. Still adjusting to life
                                      appointment with Dr.          with a third child, they took Victoria for an MRI that brought
                                      Wong and are eager to         more bad news. A mass was in front of Victoria’s tailbone,
                                      hear more about treat-        and the orthopedic specialists had scheduled an appointment
                                      ment options for Jake. For    with a pediatric surgeon to biopsy it.
                                      the time being, doctors         “Up until this point, no one had mentioned cancer,”
                                      have prescribed               Elizabeth says. “It was as if they didn’t want to mention the
                                      Prednisone, a steroid that    ‘C’ word. Victoria was freaking out; she hadn’t had any type
                                      should help him walk          of medical experiences besides well visits to the pediatrician

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                                                                                     prior to this.”          more rounds of chemotherapy.
                                                                                       Victoria was also       “We already had a date set for that evening and a sitter lined
                                                                                     losing sensation in      up,” Elizabeth recalls. “We went to the movies and looked for
                                                                                     her left foot and        the one with the longest playing time. For that two-plus hours,
                                                                                     couldn’t control her     we tried to forget the life that we were actually living.”
 photo by Couture Portraits by Heather




                                                                                     toes. They soon           The two additional rounds of chemotherapy turned to four,
                                                                                     learned this was a       and the treatments were making Victoria so sick that she
                                                                                     result of the tumor      didn’t talk for a week. At this stage of treatment there were
                                                                                     having broken off. It    also added risks, including organ damage and hearing loss.
                                                                                     had collapsed her         Finally, in mid-October, Victoria completed her chemo treat-
                                                                                     vertebrae, was block-    ments. At this point the Martinsens had been in the hospital
                                                                                     ing her bowels and       every two weeks since January, each time staying a minimum
                                                                                     had left three spots     of seven to 10 days. Victoria had received eight rounds of
                                                                                     on her lungs. At this    chemo and had undergone five surgeries, and there were a few
                                                                                     point the Martinsens     more surgeries scheduled for the future. Their medical bills
                                                                                     received the dreaded     had topped $1 million – thank goodness for their individual
                                                                                     news.                    insurance, which, coincidentally, they had almost changed just
                                                                                       “I remember asking     weeks before the onset of Victoria’s illness.
                                                                                     the doctor, ‘Are you      When this all started, Victoria’s alpha-fetoprotein count
                                                                                   telling me my child        (which can indicate certain types of cancer in men, non-preg-
                                         has cancer?’” Elizabeth says. “It was a horribly sick feeling.”      nant women and children) was 56,000; at press time, it was 2.
                                           Their fears were confirmed. The physicians concluded the           While the Martinsens hope and pray Victoria will stay
                                         cancer was the result of un-dissolved fetal tissue. The tissue       healthy, they know all too well that this disease can return.
                                         had settled and become a part of her since birth, a silent killer.   For this reason, they are in a holding pattern. They hope to
                                           The whirlwind continued with their new findings and                have the colostomy reversed, and they will have doctors keep a
                                         Victoria was soon on her way in for her first surgery. The doc-      close watch on her, especially for this next year, but also for
                                         tors discovered that the tumor had its own blood supply; dur-        years to come.
                                         ing the surgery Victoria began bleeding profusely. “In one            The Martinsens’ lives have been turned upside down, but all
                                         week we went from thinking she’d hurt her back to a man              they can do is to keep looking up. “What becomes normal for
                                         telling us they were trying to sustain her life,” Elizabeth          you is so different from what it is for everyone else,” Elizabeth
                                         recalls.                                                             says. “Suddenly you become acutely aware that people don’t
                                           Following the biopsy Victoria had a colostomy – a surgical         understand what you are going through … it is so nice to have
                                         procedure that brings the end of the large intestine through         my husband because we truly understand what we are each
                                         the abdominal wall so excrement can drain into a bag attached        going through.” They rely heavily on each other and feel that
                                         to the abdomen. She also had her stomach pumped and her              this whole situation has brought them closer.
                                         colon cleaned out because she had been unable to have a               The Martinsen family couldn’t be more grateful for the kind-
                                         bowel movement for weeks. These procedures earned the                ness of others. “We have had so many people that have been
                                         Martinsens a three-week stay at Carolinas Medical Center, all        so selfless through all of this,” Elizabeth says. “When this first
                                         the while tending to a newborn as well as their 5-year-old son,      began, there was a woman who came and stayed with her
                                         Alexander. Nils, self-employed and the owner of two small            daughter at our house for six weeks. The meals, the donations
                                         businesses, pressed on with work.                                    … we have been so touched by strangers and friends.”
                                           The Martinsens were ecstatic to go home after 21 days in the        Victoria, who recently turned 5, is also extremely positive.
                                         hospital, but unfortunately the colostomy had not worked. It         She has been a bit
                                         was back to the hospital for another three weeks.                    “inconvenienced”
                                           “Think about how you feel after coming home from a week            but just looks for-
                                         vacation,” Elizabeth explains. “It’s so disruptive. Laundry          ward to the little
                                         piles up; bills need to be paid. This is what we kept facing,        things, such as tak-
                                                                                                                                                                                   photo by Couture Portraits by Heather
                                         over and over and over.” All they wanted was to be back in           ing a shower or a
                                         the comfort of their own home with healthy children – and            bath once her reha-
                                         instead Elizabeth was spending every day at the hospital while       bilitation is complete
                                         Nils took the night shift.                                           (parts of the treat-
                                           During their second stint in the hospital, Victoria began the      ment have forbidden
                                         first of four rounds of chemotherapy, which finally concluded        her from taking a
                                         Easter weekend. Surgeons removed her tumor and the                   shower for this past
                                         Martinsens truly believed things were looking up. But alas           year).
                                         more bad news awaited them.                                           “We are just so
                                           The colostomy removal was scheduled for July 9, but prior to       happy to still have
                                         that, lab results indicated that the cancer was growing again.       our child with us,”
                                         Instead, doctors used that July 9 time slot to try to remove the     Elizabeth says. “We
                                         cancerous tissues. On the Martinsens’ 15th wedding anniver-          were so thankful to
                                         sary, they got the news that the surgery was not successful in       celebrate her fifth
                                         removing all the cancer. Victoria would have to undergo two          birthday.”

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                                 Victory at Last                                                                                     Doctors sent the family to yet another hospital, Carolinas
                                                                                                                                   Medical Center Uptown, where a surgery would be performed.
                                   For every tale of despair relating to sick children, there are                                  The surgeons explained Brock’s case was a matter of life and
                                 equally many stories of hope. And while Anthony and                                               death. In other situations they would wait a day or so before
                                 Samantha Williams of the Mountain Island Lake area have                                           doing the surgery because of the level of trauma the less-than-
                                 journeyed a long and arduous road to this point, they rejoice                                     two-week-old baby had already endured. But in this case, there
                                                               that it’s all behind them.                                          was no other choice.
                                                                 When their first and only child                                     The four-hour surgery was successful. Once again, Brock
photo by Photography by Chanda




                                                                Brock was born on September 23,                                    spent eight days in the hospital before being discharged. The
                                                                2006, Samantha did what many                                       Williamses headed home in hopes of calmer times, but the
                                                                new moms did: She cuddled and                                      next few months remained a rollercoaster. Brock was found to
                                                                kissed him and nursed him for an                                   have a double hernia, which required yet another surgery
                                                                hour. It wasn’t until they changed                                 when he was 2 months, and right after he turned 4 months
                                                                his diaper that they realized some-                                old he underwent his sagittal anorectal plasty. During this pro-
                                                                thing was wrong with Brock. He                                     cedure, doctors created a rectum for Brock.
                                                                was born with an imperforate                                         In May Brock had a colostomy closing and his body took
                                                                anus, which meant that he did not                                  wonderfully to the new and normal way of excreting. Mom
                                                                have a rectum.                                                     and Dad thought once again that they were finally in the
                                                                 Brock was immediately sent to                                     clear, but one more issue




                                                                                                                                                                                                       photo by Photography by Chanda
                                                                the NICU, where he spent the                                       remained. Right after
                                                                next couple of hours. During this                                  birth doctors had also
                                                              time, a cardiologist came to meet                                    diagnosed Brock with
                                 with the new parents, who were obviously distressed by the                                        hypospadias, a condi-
                                 recent findings. Yet the news they were about to receive was                                      tion that affects the
                                 also something they were not anticipating. Children born with                                     urinary opening. His
                                 an imperforate anus, they learned, may also have other con-                                       urologist scheduled an
                                 genital anomalies, including cardiac ones.                                                        MRI to check his
                                   “We were in such a state of shock at that point,” Samantha                                      spinal cord, which can
                                 recalls. “My hormones were raging, we’d had all this awful                                        sometimes be affected
                                 news and we had no experience with any of this.”                                                  by hypospadias.
                                   Brock’s medical team came across a few issues with his                                          Instead, they found a
                                 heart, but fortunately none of them required surgery. They                                        tumor over his kidneys and growing into his spinal cord.
                                 did, however, prepare him for a colostomy surgery the next                                          “I was planning his first birthday at the time,” Samantha
                                 day. The procedure went perfectly and after an eight-day stay                                     says. “I went from researching party planning online to
                                 in the NICU, the Williams took their baby home. But four                                          visiting the American Cancer Society Web site. This was a
                                 days later, Samantha suspected something was terribly wrong.                                      really hard one for my husband and me. No one ever wants
                                   “It was 8 p.m. and while feeding him, I started crying,” she                                    to hear anything is wrong with their child … but at least the
                                 says. “I just knew something was wrong.” After a 4 a.m. feed-                                     rest of the issues were all related. This cancer was a whole
                                 ing, Brock started crying and didn’t settle for 45 minutes. At                                    new ball of wax for us.”
                                 long last he calmed down, but Samantha noticed a difference                                         Just three days after his first birthday, Brock went in for yet
                                 in his breathing pattern, and she also noticed he was getting                                     another surgery. Doctors removed the tumor, which turned
                                 cold. She called 911 while taking his temperature. The ther-                                      out to be malignant. On the bright side, it was a stage-one
                                 mometer read just 95°.                                                                            tumor and “biologically favorable.” That means Brock won’t
                                   An ambulance whisked Baby Brock away to Presbyterian                                            need radiation or chemotherapy, and chances are very slim
                                 Hospital in Huntersville. By the time they reached the hospi-                                     that the tumor will return.
                                 tal, his temperature had fallen to 88°. Doctors placed IVs in                                       After 13 months of ups and downs, the Williamses are hop-
                                 his shins to help keep the blood flow constant and transported                                    ing for a smooth 2008. For now, they are looking forward to
                                 him to Presbyterian Hospital Uptown where he would receive                                        spending their time doing the more “normal” things that
                                 the best care.                                                                                    they’ve missed out on. But they haven’t stopped being thank-
                                   This time the doctors                                                                           ful for a second.
                                                                                                  photo by Photography by Chanda




                                 ascertained that Brock                                                                              “It has made our relationship stronger,” says Samantha.
                                 had a coarctation failure,                                                                        “People comment all the time that they are so thankful our
                                 meaning that he was                                                                               relationship is so strong – because I think it could really tear
                                 getting no blood circula-                                                                         you apart. We have been very, very blessed.”
                                 tion from his chest
                                 down. “We were just                                                                               Want to help? Find out how you can help the families
                                 blown away,” Samantha                                                                             featured by visiting the following Web sites:
                                 continues. “We were not                                                                           The Pritchard Family:
                                 all that familiar with                                                                            www.parentprojectmd.org/goto/jakepritchard
                                 anatomy and were cer-                                                                             The Martinsen Family:
                                 tainly not prepared for                                                                           www.caringbridge.org/visit/victoriamartinsen
                                 any of this.”
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