My daughter danced with S during her first ballet class. Both girls were the same age, same height, similar weight, and overall size. They moved as gracefully as five year olds do in ballet. In the lobby, all the mom’s chatted in the waiting area; sharing similar stories of tantrums, school choice and of course ooohed and ahhhed over our precious ballerinas. My daughter Bella and S quickly became friends. One day B mentioned S’s “stripes” and asked me if she was hurt. I had never noticed them.
The next time we had a playdate, Bella and S were playing dress up and Bella said “Look Mom, these stripes” pointing at her young friend. S’s mother quickly assured B that these were her special lines; she was born with due to a rare genetic condition called Incontinentia Pigmenti (IP). S was born with IP, a genetic disease of the skin, hair, teeth, breast’s, and central nervous system. S’s mother quickly showed me her “stripes” which can resemble a dark striped line; similar to a stretch mark but in patterns of a marbled stripe.
S’s mom explained she was unaware that she even had the disease until her daughter was born. Shortly after S’s birth, she developed progressive rashes. LINK When S was just 5 weeks; both mom and daughter were confirmed to have the rare diagnoses and disease of Incontinentia Pigmenti. This was confirmed through bloodwork at Baylor College of Medicine DNA Laboratory.
The family soon learned the prevalence of IP is unknown, as is often the case with rare disorders; it is likely that IP often goes undiagnosed or misdiagnosed. Common physical characteristics can be seen on the Skin, Hair, Teeth, Nails, Eyes, Nervous System, and Breast.
Males with cannot survive without a functioning NEMO gene, and thus die in utero.
In females, some cells have a normal functioning NEMO gene (from the normal X chromosome) while other cells have a defective NEMO gene.
A woman with IP has a 50% chance of passing on this gene to each of her daughters. For male fetuses, of the 50% who inherit the IP gene, the great majority will result in a spontaneous abortion (or miscarriage) as IP is nearly always lethal in a male fetus. But for extremely rare exceptions, any live born male will be unaffected. In this family’s case, the latter was true and S has a healthy younger brother J.
It can be a devastating experience for parents to be told that their baby has IP. When a child has a rare disease, close personal contact among families and friends can provide emotional support and lessen the feeling of isolation. Families can gain support and resources worldwide through the national database of health professionals, with expertise in IP, to help direct individuals to appropriate medical resources and consultants.
You can follow the IP organization IPIF in addition to their own organization page, they also have a WORLD Facebook page
The National Institutes of Health (NIH)
Baylor College of Medicine DNA Laboratory
Please Join the IP movement as they struggle to gain a solid explanation for this rare disease through collecting samples made possible by the support of the World Wide Incontinentia Pigmenti Genetic Biobank; containing DNA samples from subjects affected by a rare disease
We are looking for volunteers to sew SMILE DOLLS!!!
Smile Dolls or Muslin dolls are used by Child Life Therapists to alleviate fear of the unknown while communicating about upcoming medical procedures.
Smile Dolls of all shades of skin-toned fabric are needed.
Please note: Smile Dolls should be free of adornment. Do not clothe the dolls, put faces or write on the dolls.
View the Smile Doll pattern and print it to trace.
What you’ll need:
Smile Doll pattern
½ yard skin-toned fabric
shears or scissors
Step by step instructions:
1. Cut out pattern and tape the two sections together
2. Cut two pieces of fabric for each doll
3. Stitch doll together, leaving opening on doll leg as indicated on pattern
4. Clip all curves around the entire doll
5. Turn doll inside out
6. Stuff doll very firmly with polyester fiber-fill
7. Hand stitch closed the opening on the doll leg
Please contact Sarah if you are able to participate. This will be an ongoing need. Thank you!
A new type of temporary skin helped make the procedure nearly painless for the toddler.
Healthcare establishments today, seem to be limited on the type of opportunities; they provide their pediatric patients coping with health-care experiences.
Community Regional Center sets the bar high in providing these opportunities, located in central California; the Community employee teams have realized nearly $26.2 million in annual savings over the last four years, allowing more resources for patient care.
Through focusing on increasing the patients’ overall experience; including access to a child life specialist during procedures, and utilizing new alternatives the hospital was able to provide top quality care both medically and emotionally.
After spending the night in the hospital, the 2½-year-old was wary about letting the masked nurses touch his bandaged burns.
But his tears quickly disappeared when Child Life Specialist Kimberly Kozub brought out a bottle of soap bubbles to aide in distraction and increase coping skills throughout the procedure.
Toddler Dontes Hines (pictured) alongside his burn care medical team, including child life specialist Kimberly Kozub, demonstrated just how painless the procedure can be during his first dressing change.
“He barely noticed as burn nurses deftly snipped his bandages and applied another layer of temporary skin”
Child life specialist, Kimbery Kozub, was able to connect with Dontes on a developmental level that the toddler was able to portray as favorable; thereby allowing Dontes to participate in an activity throughout the procedure that he identified with as playful and enjoyable.
Sandra Yovino, RN, director of the Leon S. Peters Burn Center, said the skin substitute “is especially beneficial for children.
We decrease pain because we don’t have to do as many dressing changes. The temporary skin covering just flakes off in 10 to 14 days and the skin heals under it. Before the move to use the new temporary skin, Dontes would've had to be sedated while the human skin graft was scraped and replaced.
“Our goal is to significantly reduce post-traumatic stress for our pediatric patients,” she said.
Toddlers who are hospitalized may experience loss of routine and protest through uncooperativeness, and resistance towards any immobility or restriction.
We all know how much toddlers love to take off layers and remove things that are new or foreign to them.
Imagine the verbal and physical protest from a toddler who awakens from a procedure with drug induced fogginess, forced to stay in bed and they are unable to touch their arm which is newly bandaged.
Then imagine the experience Community Regional was able to provide to both the child and the family- that is the difference of patient focused care.
Sarah Morrison is the Founder and Child Life Specialist for Giggling Goat Child Life Specialties in Northern Colorado; which offers child life consultations for healthcare establishments looking to increase patient satisfaction, as well as providing child life services to children during medical or traumatic procedures.
You can follow her @ facebook.com/GigglingGoat4Kids or Twitter @ GigglingGoatCLS
Colin Leypoldt a local high-school wrestler is defining his strength in a way that gives him purpose. Colin has been given a diagnosis of Fahr’s disease; also referred to as Fahr's Syndrome. A rare genetically dominant (>1/1,000,000), inherited neurological disorder characterized by abnormal deposits of calcium in areas of the brain that control movement. There is no known cure for Fahr’s and eventually the disease will result in death.
Colin’s diagnosis was made only a year ago, after battling up to as many as 70 seizures a day. Yet Colin has been Wrestling since the age of 6. He finished in fourth place during All-state champions last year; which qualified, the now freshman, for the state meet;which started yesterday Thursday February 19th, at the Pepsi Center. The doctors say this disease is extremely rare; and only a handful of people I the world have been confirmed having this condition.
Colin often requires a nap to get through an entire day of school; while the symptoms of Fahr’s are battling with Colin’s nervous system causing exhaustion, headaches, seizures and spasticity the exhaustion don’t extinguish Colin’s desire to define his own life. Colin’s body requires 4x the amount of energy it takes a healthy teen to accomplish a single task, yet wrestling has given Colin a purpose and now a newly defined goal- to keep wrestling as long as he’s living.
Colin states his courage and strength best through his journal-“So as I go into this final month of my Freshman High School wrestling career I remind myself where I have been, Where I am, where I am going, and everyone that has helped me get here. I am a wrestler and wrestlers don’t quit!! Fahr Too Strong!!!”
Please join the Leypoldt family in a silent auction to support the FAHR TOO STRONG FOUNDATION and raise awareness for Rare disease. The event will take place on Saturday Feb 28th at 1933 Brewing Company located at 4025 South Mason Street Suite C, Fort Collins, CO 4-8PM. There is a suggested donation fee of $10 for admittance. Visit Fahrtoostrong.org for more information.
Sarah Morrison is the Founder and Child Life Specialist for Giggling Goat Child life Specialties in Northern Colorado
Follow her @facebook.com/GigglingGoat4Kids or Twitter @ GigglingGoatCLS
Army Staff Sgt. Perry Hopman Iraq 2006-08 Wearing his mask—half patriotic, half death’s-head—Hopman confronts the battery of medications he takes daily for blast-force injuries he sustained while treating soldiers as a flight medic. “I know my name, but I don’t know the man who used to back up that name … I never thought I would have to set a reminder to take a shower, you know. I’m 39 years old. I’ve got to set a reminder to take medicine, set a reminder to do anything… My daughter, she’s only four, so this is the only dad she’s ever known, whereas my son knew me before.”
Photo Credit: Lynn Johnson / National Geographic
Art Therapy is often paired with Child Life services as an option for self-expression and way to communicate feelings. There can often be little words just mutual undersatnding and a powerful connect through art. You can read more about veterans and art therapy through National Geographic feature article.
It’s important to choose your words carefully when speaking to someone with a new cancer diagnosis. Though you probably mean well, it's a very complex change in a child and families life. If you want to support the child and families’ journey towards a new normal here are some helpful tips of what not to say and what to say. In fact, sometimes gestures speak louder than words. For instance, sending flowers or a card may be most appropriate until the initial shock wears off.
Every cancer patient has a unique journey ahead of them, each course of treatment is tailored exactly to their bodies specific cells. So what now? Well. But to avoid putting your foot in your mouth, please don’t utter these next 10 phrases.
1. "You are strong and will get through this."
This message can push expectations that you need to be “tough” to survive. A new diagnosis brings out all types of feelings; including guilt. Instead, try validating the family’s feelings through giving space for them to understand and express their own emotions. A great example would be: ‘How unfair. You must be so angry’ The way this was phrased allows r someone to let out pent up emotions.
2. "How are you feeling?"
This might surprise you, since you may feel that this sort of phrase shows that you care. However, "So many people ask patients that; It gets really old and annoying after a while," Also, keep in mind that the person probably doesn't feel so great, and asking this question only reminds him or her of that.
3. "Can I do anything to help you?"
This is so generalized, and as a result, the family will likely say no. They are coping with a minute to minute situation; and most likely beyond overwhelmed to think of a way you can help. Instead, suggest doing something specific you are committed to following through on- such as: if you bake offer to make a meal or even arrange a month of meals with fellow friends in the community. Assisting with ongoing basic needs is such a huge support!
4. "How serious is the cancer?"
Don't ask detailed questions about the diagnosis or treatment plan. If the family wishes to share information listen at their pace. Cancer treatment plans can rapidly change and many patients and families find repeating the same information over and over taxing. Try asking if there is social media or caring site you can follow.
5. "My grandmother/mom/sister/aunt/friend had cancer..."
The patient's situation may remind you of someone else, but telling a story about a family member or friend who has or had cancer is simply irrelevant—and it's especially a bad idea if it's a fatal story. As much as you may think you can relate, your stories are not going to change the patient’s diagnosis or prognosis, just don’t go there!
6. "I read an article in the newspaper that said you should..."
Please don't play doctor—the patient already has several members on their care team. "If someone wants information, he or she will ask for it." The patient is likely already being inundated with information and advice from a medical team, so your two cents about an article from a newspaper, magazine or isn't necessary.
7. "Your hair looks good like that."
Anything that calls attention to hair, loss of hair or a lack thereof; is just feeding into any negative emotions associated with the unwanted side-effects. This was not a planned or wanted change that can easily be changed.
8. "God doesn't give you more than you can handle."
This phrase is commonly tossed around in hospitals and all over Facebook newsfeed. If you're religious, this might be something that comforts you; but if the patient is struggling with faith or not religious, this phrase is not going to make him or her feel any better. In fact, it's going to make the person feel uncomfortable.
9. "I know how you feel."
The truth is, you never really do. If you've been through a similar cancer experience, you may have an understanding, but unless you are going through this patient and family’s identical experience; you have no idea what that person's experience is like. Instead try to stay focused on the patient's current needs and concerns.
10. "You must have done something to get it."
Believe it or not, this is said quite a bit. People want to assume there is a connection, as humans we want to find answers that can help something awful make sense. Don't even begin to bring up the potential cause of the cancer, because that unfairly assigns blame to the patient.
Above all, being patient, and letting the family reach out to you; can be most helpful. If you’re still stuck on words send flowers, or a surprise to bring a smile!