AS Family article
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Poems by Darren Humphries
“We treasure the short time we had with Elijah” – Darren Humphries (Father to Elijah) Elijah Humphries February 2004 – August 2007 As I sit and write, it is a few days after my son Elijah‘s 7th death Anniversary. Elijah was born in 2004 and was diagnosed with Angelman Syndrome (Deletion Positive) in April 2006. Elijah died in August 2007 as a result of brain damage caused by seizures. It has been a challenge for me and my wife Julie and daughter Francesca to learn to live with the death of someone we loved so much. We treasure the short time Elijah was able to share our life together as a family. We are…
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Hello Summer!
Hello Summer!! By Sybille Kraft Bellamy “True health starts with fresh fruits and veggies” Summer is the perfect time to enjoy seasonal fruits and vegetables. The LGIT diet is a healthy diet when a high diversity of good quality products are used. No “strange” food! Only real natural food without packaging! Our family, like most of the families who have an individual following the LGIT, eat low glycemic food. The principal difference is the modification of the fat ratio. Max has a higher fat ratio in all his meals in order to obtain the effects of the LGIT. Since mid spring, we have been able to find great fruits and…
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Dr. Anna Larson: A Life-Changing Encounter Leads To A Lifetime’s Inspiration
We’ve all heard stories about unexpected encounters that change people’s lives in profound ways. While not all of us have experienced that kind of event, Dr. Anna Larson is one who has. It came when she was applying to medical schools. A friend mentioned that a couple she knew was seeking a caregiver for their son, Jake Pritzker, a young adult with Angelman syndrome (AS) living in St. Paul, Minnesota, and Anna accepted the task. Once she started working with Jake, it helped focus her future plans on specializing in pediatric neurology and in particular, epilepsy and AS. It is a path she is still pursuing, though her accomplishments are…
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Eva’s Journey With Seizures And What Her Mom Is Doing About It
By Claire Lerman On the 28th June 2013 our beautiful little 16mth old Eva was diagnosed with Angelman Syndrome. Just 4 months after her diagnosis Eva started with epilepsy and has been in & out of hospital numerous times. All the medications we were given completely failed to control Eva’s seizures. We had read about something called a Ketogenic diet & we were desperate for Eva to be able to try this as a form of medication. After battling to get consent to go onto the diet we eventually had our neurologist’s consent. Eva started the diet on the 4th March 2014 at which point her seizures had ramped up…
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Summer Time Tips for Water Safety
By Shannon Purcell, AngelMom to Kyle and Swim Instructor Joshua Hamrick featured in the picture, age 10 We know Angels are fascinated with water, let’s have a fun and safe summer! Touch supervision…be within arm’s length of your child at all times Arm floaties, noodles, and inner tubes should not be considered safety devices under any circumstance. A Coast Guard-approved life jacket is always recommended. CPR is a must and saves lives. Anyone with a seizure disorder should always be monitored with one-on-one supervision Make sure your pool is up to code and always make sure a minimum of a 4-foot fence surrounds the pool on all 4 sides and…
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Special Tips for Traveling Families
By Eileen Braun, Executive Director of the Angelman Syndrome Foundation and mother to a young lady with Angelman syndrome. (taken from the previous article in Tips for Managing Holiday Stress, this needed to be its own article because it applies to more than just the holidays) Medications and Medical Records Gather your child’s medications and a copy of his or her medical records. Make sure you have enough refills for the length of the trip and a few days extra in case of inclement weather. TSA Cares blog – What to expect with flying with meds. You can also download the TSA Notification card. Medical Equipment If you are traveling with medical…
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Juicing
Juicing! By Sybille Kraft Bellamy A perfect way to provide a great amount of vitamins and minerals suitable for individuals following LGIT. Juicing has no limit! Let your imagination do the work! There is so many options to make juices with the LGIT-authorized list of fruits and vegetables. One of Max’s favorite juices is a mix of carrot, celery, apple, cucumber, ginger, turmeric, and one teaspoon of olive oil. I keep the vegetables as the top quantity on the list of ingredients followed by one or two pieces of fruit and the olive oil helps to homogenize the juice. You can drink the juice, freeze it as a Popsicle, keep…
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Bye-Bye Winter Hello Summer!
Bye-Bye Winter Hello Summer! By Sybille Kraft Bellamy We are done with snowstorms, freezing rain and below zero temperatures. Now it is time to enjoy the warmer weather. Unfortunately our children with AS are not well prepared for the hot temperatures. Max, 12 years old, deletion + is extremely sensitive to hot weather and humidity. To avoid any serious health issues we have to ANTICIPATE. Children and adults with Angelman syndrome have body temperature regulation problems. They cannot adapt to rapid temperature change or extreme temperatures. In Max’s case he turns pale, his heart rate gets elevated and he becomes very lethargic. A major priority is to control his hydration.…
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Angel’s Week Off Winners Share Their Vacation With Us
By Mary and Rory Moen How do I begin to tell everyone what this “Week Off” has meant to us. It was way more than a trip of a lifetime. First off, having “experts” like angel mom Lisa Jamieson and the Hamms’ PCA, William Twiner providing care for our angel Samantha turned out to be one the best experiences ever. Sam’s aunties learned so much from William and Lisa. What they left behind was knowledge, inspiration and motivation. To start with, Sam fell in love with William immediatley! Just to know that Sam was in good hands and being completely spoiled, allowed for us to really let go and relax. We had been in a pictello rut and stopped…
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Angel Family Experience with a Safety Sleeper
Angel Family Experience with the Safety Sleeper By Stephanie Moyer, Mom to Colin age 8 We have been using the Safety Sleeper for our son Colin for more than a year now. It has been a total game changer. Colin went from being up three to four hours every night, and he would kick the door and wake up the whole house. Since we received The Safety Sleeper, he sleeps 12 hours every night! We have seen the greatest difference when we travel. Before, we would go on vacation and Colin would average two hours a night — not much of a vacation! Now, we take his bed, and he…
