Profile: Lorna Tyrell

Lorna Tyrell: Personification of Perseverance

The term “supermom” takes on a whole new form in Lorna Tyrell.  The mother of four girls: Olivia, Rebekah, Mary, and Naomi, is a housewife simultaneously providing full-time care for 7-year-old Naomi, who suffers from Niemann-Pick Disease.

“There’s always that elephant in the room,” Tyrell admits. “You know you see another little girl who’s her age running around or playing and doing dress up and there’ll be a little pang. That hurts. There’s always that hurt.”

Naomi’s degenerative disease prevents her from walking and talking like the average girl her age.  Tyrell and her family spend every day trying to cope with Naomi’s illness as well as caring for her.

Naomi went from walking with assistance and speaking three-word sentences as a toddler, to being in a wheelchair full-time, unable to communicate with words, and being fed through a tube.  She now has seizures, and severe muscle pain, and along with food she is given seven prescriptions through the tube, most of which are painkillers and muscle relaxants.

“She can’t call me so we’ve developed this kind of language with her breathing; the way that she breathes I can tell that she’s awake or she’s asleep. If she’s in pain I can tell by the way she breathes. So I can hear her breathing a certain way and know oh ok she’s awake.”

At 8-weeks, doctors noticed Naomi’s abnormally large spleen, and immediately sent her for more tests.  After being wrongfully diagnosed and treated unsuccessfully with enzyme treatments, the Tyrells were told that 2-year-old Naomi had type C NPD.

Niemann-Pick Disease (NPD) is a rare genetic disease broken down into three types: A, B, and C.  The three types manifest differently, and have different symptoms, but the prognosis for all three is fatal.  Types A and B are caused by a deficiency of a specific enzyme activity, which causes major organ systems to malfunction.  Type A patients usually do not live past age three, while type B patients can live into late childhood and even adulthood.  Type C causes a buildup of cholesterol in major organs such as the spleen and liver.  Type C also causes a chemical compound called gangliosides to accumulate in the brain, causing damage to the nervous system, and eventual neurological deterioration.

Tyrell has created a line of Persevere clothing, mugs, hats, and bracelets, with all proceeds going to benefit the National Niemann-Pick Disease Foundation (NNPDF).  She started by creating her own version of the “Livestrong” bracelet; her friends suggested the word Hope.

Hope to me, the word, seems like something that you do like you just sit and wait and hope and that’s not at all what we want to do and that’s not what any other parent who’s child is sick really does, so we wanted a word that showed action and Persevere we thought was appropriate not only for the children who are going through such a horrible thing but also for the adults who are living it with them,” she explained.

She ordered 500 Persevere bracelets, and they sold within a week.  Tyrell’s next order was for 10,000 and they were purchased all over the U.S., Canada, even Australia and Japan.

“It was so cool to see, I did that. You know I mean it sounds kind of conceited and I don’t mean it to be but it made feel me like when the doctors said to me there’s nothing you can do it made me feel like ha you can’t tell me there’s nothing I can do for my daughter. This is what I can do for my daughter.”

Although running the Persevere campaign has helped keep Tyrell grounded, she admits, “It was a lot harder in the beginning, because in the beginning I had all these hopes and dreams for my family. You know when you’re a little girl and you dream about who you’re going to marry and what your kids names are going to be. And you know you have these dreams from the time you’re a child of what your life is going to be like as a mother and as a wife. And when Naomi was diagnosed I had to realize that dream was gone; that’s not what my life was going to look like anymore.”

Tyrell and her family and friends turned to their faith, begging God for a miracle. As Naomi worsened, and no miracle came, Tyrell felt like she was fighting God, and losing.  Until one day, she was given a Bible verse, Isaiah 30:21: “This is my way, walk in it.”

That was the turning point, according to Tyrell; she stopped fighting, came to terms with her daughter’s illness, and began to embrace her situation, because she has no other choice.

“It’s hard every day I wake up; it’s a decision I have to make. Most of the time I just pray myself through the day.  Sometimes I try to just get into such a routine that it’s just normal. This is our new normal.”

Tyrell admits it’s harder to cope when she sees girls Naomi’s age talking, running, playing— all the things Naomi can’t do.

“But the other thing too is this is who she is and it’s so dishonoring for me to wish for her to be somebody else and I think she’s perfect how she is and how many mom’s get to sit and hold their seven year olds like this?” she looks down at Naomi and cradles her daughter closer to her chest.  “So there are definitely blessings.”

Tyrell juggles her husband, four children, two dogs, and a hamster, and hopes her family doesn’t resent the sacrifices they have made on Naomi’s behalf.

“When you have a squeaky wheel that’s squeaking like crazy, and then you have other kids who need your attention and who are squeaking in their own ways it is so hard to know how to divide my time. And what it comes down to is if she’s choking and it’s a life or death situation and this one over here needs a prom dress, you know I can’t take you right now.”

Her husband and children have realized this, and they’re Tyrell’s biggest supporters.

Her daughter Rebekah, 15, defends her mom saying, “Of course she’s really busy with Naomi during the day, but she makes time on the weekends to take Mary to the movies or us to get coffee.”

Tyrell and her husband, Leon, have date-night once a week, and she believes that Naomi’s illness has strengthened their marriage and made them closer together.

The family lives one day at a time, as Tyrell does her best to keep theirs lives in some sense of order.

“It’s like playing whack-a-mole, hit each problem as it pops up and hope the kids do ok.”

For more information, to donate, or to purchase Persevere items, please visit the National Niemann-Pick Disease Foundation at www.nnpdf.com.

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