A Day in the Life...

Wars are being fought all over the world. In Holtsville ,LI. there is a war being fought 24hrs./day, 7days /week and there is no cease fire. Karen and Michael Peshkur are fighting against all odds to give their daughter Grace Catherine the best life possible and prevent their most feared enemy i.e. infection from claiming the life of their daughter. Everyday since Grace was born in March 2002, they fight this battle along with doctors, nurses, therapists, wound care specialists, family, friends and most of all their love. Grace, better known as Tinkerbelle or Princess, was born with a devastating, life threatening, rare genetic skin disorder called Epidermolysis Bullosa. Of the many subtypes, Grace was diagnosed with the most severe, Recessive Dystrophic. These test results took one year since there is only one lab in the world that tests for this condition.

This condition has no cure. Friction, heat ,stress and /or trauma produce blisters leading to scarring. Due to the delicate nature of their skin, these children are called "Butterfly children". The blisters occur anywhere and everywhere on the body including the GI tract and eyes. Excruciatingly painful and itchy, she requires daily medications, however these never take the symptoms away completely. Her mouth and tongue are also affected so her speech and eating are becoming increasingly difficult. It is a never ending battle to maintain the calories and protein needed and also prevent the blisters from spreading.

The battle begins every morning with a dressing change. For 1 ½ -2 hours, Karen and Michael unwrap, wash, asses and rewrap chest arms , legs and feet. Methodically, amidst Grace’s piercing screams, wearing gloves to prevent infection, they must clean each area, break blisters with a needle or cuticle scissors, apply a variety of ointments (depending on the stage of each wound) and wrap each area.

There is an assortment of munitions used for this endeavor, delivered bi-weekly. Some are covered by insurance, some are not. They are all necessities for Grace’s well-being, such as non-adhesive tape, gauze, needles, Bacitracin, aquaphor, normlgel, Mepitel and Mepilex, Chux, Cetaphil and of course her Wiggles and Bear videos, for distraction.

Karen and Michael are the Commanders and direct all operations among the many volunteers. It takes a minimum of 4-5 people for a dressing change and a professional RN to help Mom and Dad assess the wounds. After the major dressing change, there are many mini-changes throughout the day.

Grace has never had her feet unwrapped since from her birth she has had open wounds. Care must be taken to prevent her toes from webbing together. The same problem arises for her fingers. On her first birthday, mom and dad were able to unwrap her hands to taste her cake and with careful care , they have been able to leave them unwrapped.

Her body temperature is critical. Humidity is deadly and sunshine is her enemy since she is prone to skin cancer. Grace must be kept in air-conditioning to prevent sweating. Imagine wearing winter clothes in the summer ,and having open festering wounds all over. When Grace does go out on cooler days, all her medical supplies travel with her in two carry-on size suitcases.

Her clothes must be 100% cotton with the tags removed. Only certain clothes can be used and her carseat and kiddie chair are covered in sheepskin. Her mattress is specially designed to be friction free. She must be watched constantly for fear of bruising. A slight bump for Grace could be a medical emergency.

In spite of all this, Grace Catherine fights her war with a smile and a giggle. She is an active toddler and is now walking and even running. These activities impose new battles to conque and require different equipment i.e knee pads and special shoes. Inside her delicate outer shell is a typical 2 year old that yearns for the normal childhood activities. This adds to the frustration.

Caring for any child is a selfless act of love, but caring for a child with EB demands a special strength. Ignorance of this condition causes undue stares and inappropriate comments. Along with the constant pain of living with this daily, Grace and her parents must suffer these indignities each time thay take Grace out. They are very appreciative of honest questions rather than whispers behind their back. They strive to give Grace her dignity at all times and are aware that because of the rarity of this disease, most people do not understand their battle. Let us take you through a typical day…

12:01AM Grace sleeps fitfully

1:15AM awake, screaming..Large blister on Right arm , chest draining…Karen and Michael pop blisters and rewrap chest and arm and rock to sleep with a bottle.

3AM awake screaming medication for itch given…rocked back to sleep at 3:45AM

6:30 AM Dad leaves for work ,exhausted …Mom prepares Grace’s meds in color coded bottles

7:15AM Grace awakes screaming…Karen changes her clothes, tries to give Grace breakfast, along with a vanilla shake…

9AM Grace calm, watching cartoons.

10AM RN and family arrive for dressing change

12:30PM resting in Mom’s arms

1PM Speech therapist arrives ..expresses concern about tongue and oral blisters

2PM Nutritionist arrives…suggests a high fat, high protein liquid diet

3PM play time with mommy

5PM Dad home…Mom leaves for work

6PM Grace’s dinner ..Dad pops blister on her hands and rewraps leg dressing.

8PM Mom home…clothes change…body check..more blisters popped..pajamas and special loving time…maybe a stroller ride.

11:30 Grace falls asleep and routine begins again.

The war is ongoing and the battle is all encompassing. Expectations have been shattered , dreams unrealized and tears are shed daily. Throughout it all Princess has managed to touch all who meet her. She has permeated all with her soulful eyes, her quick wit and her inordinate resilience. She has learned all her animal sounds and the Bronx cheer. Her family has learned to treasure the moments, as they continue to fight this devastating foe, they pray for a cure.

Since EB is hereditary and this particular form is most severe and requires the most care Karen and Michael have placed their future family on hold. This has been a painful decision, however Grace’s care is all encompassing. They must make their lives simpler in order to have the time required to care for their precious Grace. The home that they live in now is would require too muce renovation to make it suitable for Grace. For example, they need central air, all carpeting has to be removed and replaced with tile or wood. A larger area is need for dressing changes and a playroom is needed since Grace can’t go outside much. Grace is extremly prone to infections since her natural barrier is compromised. She needs an area for a pool since the chlorine is extremly beneficial to her wounds. Her parents are looking for a condo or townhouse since that would allow them more time for Grace. As she gets older, her symptoms are getting worse.

Each day in the war brings a new battle. Until the war is won, Grace and her parents are fighting against insurmountable odds. As she gets older, her needs increase. They ask for your help. Help to meet her needs and to overcome the ignorance. If and when you see Grace and her parents, please ask them about EB. Go online to the website of DEBRA and learn more. Enjoy and be thankful for each day and treasure the moments with your children.

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