Martina Baker (on the far right) and her family already have five dogs. One you may have even met before — Fritz, the reindeer dog. But here they were the evening of January 5, 2019, at the Portland (Maine) Jetport anxiously awaiting the of arrival Keeva, a Boxer/Afghan mix traveling all the way from Tucson, Arizona. Just for Martina.
Keeva is a service dog trained by Jamie Robinson, who made the cross-country trip with her. Keeva will hopefully, make Martina’s life easier and safer by alerting her to things that might trigger an allergic reaction and sounding the alarm if she’s in trouble.
Mast Cell Activation Syndrome
Martina has a condition called Mast Cell Activation Syndrome (MCAS). We all have mast cells in our immune system to help protect us against various invaders. With MCAS it’s like the immune system is constantly on high alert and something that never bothered you before can cause an allergic reaction, from itchy skin to anaphylactic shock.
It began about two and a half years ago. I was really healthy and didn’t have any medical problems. I wasn’t allergic to anything but one day I woke up and started having hives all over my body. I had to go to the hospital because I had an anaphylactic reaction. My throat started swelling up with hives. They treated me with an EpiPen.
Martina Baker
They went from doctor to doctor trying to find out what was wrong. At first, they thought it was related to stress from starting a new school, but Martina’s mother says there was much more going on.
The hives were just the beginning. She would go on to have several anaphylactic episodes, trips to the ER sometimes 3 times a week after using her EpiPen, unable to exercise, shower, be exposed to heat, smells such as perfumes, smoke, cleaning agents, etc. She was once an athlete —basketball was her sport. She went from that to being unable to do most of what normal teens can do. For example, when she would shower, wherever the water would hit her skin, welts would appear. Trips to the mall or even visiting friend’s homes. could result in a trip to the ER.
Loretta Leighton, Martina’s mother
About eight months ago, they finally got some answers and Catching Health played a role. In desperation, Loretta did an online search that included Martina’s symptoms and “Maine” and up popped a blog post I had written about Crystal Goodwin, who has MCAS. Her story and symptoms paralleled Martina’s, so Loretta reached out to her.
She was so open and helpful. She told us some things to ask the doctor and she said, don’t stop fighting.
Loretta
They ended up seeing an immunologist in Massachusetts who confirmed that Martina, too, had Mast Cell Activation Syndrome. The cause is unknown and there is no cure, but she now takes up to six medications a day that at least help calm some of her symptoms.
She is now down to an average of one ER visit every 4-6 weeks due to anaphylaxis. Hard to believe this is an improvement but it truly is!
Loretta
If you see Martina out in public, it’s possible she’ll be wearing this mask. She gets reactions from people and comments that are sometimes unkind and downright rude. If her sister Arianna is with her, watch out!
She tells people to
Martinastop saying stuff or lets them know what’s going on with me.
I’ve told a lot of people what’s going on — at my school, my friends, teachers, even. Anybody. And I tell people who say things that there’s a reason she’s wearing a mask.
Arianna
The reason is that it keeps Martina from smelling odors she used to take for granted but that are now potentially life-threatening. She wasn’t wearing the mask the entire time she was at the airport because she had taken extra medication, including Benadryl. Even with the mask and medications, she is at risk, never knowing when she will be blindsided by a new, potentially life-threatening trigger.
I have to manage it when I’m out and about. I’m afraid, I really am. It’s hard because I’ve explained it a lot to people, but not a lot of people understand.
Martina
Martina is going on 16 but hardly able to live the life of a normal teenager. She can’t even go to school anymore and attends online classes instead. She still loves to go out, but her room is her safe place.
It’s my sense of security when I’m having a really bad day with my condition. I don’t really feel that great every day but some days are worse than others.
Martina
Welcome, Keeva
Keeva may make all the difference in the world and at long last, she and her trainer Jamie arrived at the airport. She traveled all day at Jamie’s feet, endured three layovers and had to wear a doggie diaper, but thanks to her temperament and her training, she was calm and collected as she sniffed Martina and everyone else in the family. Watch the video, shot by my husband Barry.
Jamie has been training dogs for about 45 years and service dogs about 15. She calls her business Play Your Way Obedience because she uses Montessori-like games as a learning tool.
Keeva is a rescue dog that came to her at four months. She’s now three years old. As she worked with her, Jamie realized she would make a great service dog for someone.
She’s calm, loves people, doesn’t react to other dogs, doesn’t chase cats, is focused and learns fast. Those are the major criteria.
Jamie Robinson
She was originally trained as a diabetes dog and can also sniff out cancer with a 92 percent success rate, says Jamie. For Martina, Jamie trained her to identify a long list of smells that are her triggers. She also had Martina send her pieces of clothing she had worn so Keeva could get used to her scent, including when she was in anaphylaxis because that scent is different to a dog’s nose.
By the way, let me tell you how Martina found Jamie. She was in an online MCAS group several months ago when someone asked about service dogs and Jamie responded. Martina knew right away she wanted one, so she started a GoFundMe campaign to raise the $10,000 it would cost.
I didn’t get the whole amount, but a guy heard about my GoFundMe and my condition and sent me a check for the rest. We didn’t know, we just got it in the mail. I opened it and burst into tears. I was like, there’s no way this is happening. We actually have all the money and now I can get my service dog and the help I need.
Martina
And at last, Keeva is in Maine with Martina. Jamie is staying for a week as they (and the rest of the family, including the other dogs) get used to each other. As you can see, everyone is making her feel right at home. While she’s there, she’s also teaching Martina how to recognize Keeva’s alerts.
Why is she trying to pull me away? Why is she jumping on me? Why is she trying to push me into this chair? Mainly what I taught her was take me away. There’s a smell here, take me away. She’ll start walking away. She pulls hard, too.
Jamie
Keeva can also tell if Martina is having a reaction even before Martina realizes it because knows what it smells like when her body releases histamine. It happened the other night. Read this Facebook post from Loretta.
Martina is sitting at the table at a restaurant and Keeva was sleeping on her feet under the table and suddenly shot up alerting her (seen here). Then started to pull to get her to leave restaurant tonight. Sure enough lip swelling, flushing, hives began..bad news Martina had to leave the restaurant. The good news is Keeva alerted, got her up and out, took her rescue meds, and hopefully, we can avoid the hospital tonight.
Loretta
There’s no telling what Martina might encounter from one moment to the next that will put her at risk because of MCAS. I can’t begin to imagine what that must be like. When I asked her what motivates her and keeps her spirits up, this is what she said.
You can either turn it into a negative thing or a positive thing and I’m trying to turn this into a positive. I have this and it’s really, really, sad. It’s hard to go through. It pulls everything out of you like you’re not even living anymore. I don’t know where it came from but something inside me told me I just need to keep fighting every single day.
Martina
And, so, she does, and with Keeva by her side, it’s already a little bit easier.
You can follow how Martina and Keeva are doing on Martina’s YouTube Channel. If you’d like to know more about Mast Cell Activation Syndrome, you’ll find information on the Mastocytosis Society website.
One last note about Keeva. Her name is actually spelled Caoimhe, but pronounced Keeva or Kweeva. It’s an Irish name that means “gentle, beautiful, precious.” Couldn’t be more fitting and an apt description of both Keeva and Martina.
Thank you so much for covering Martina’s story. Diane Catching Health is really what got us turned in the right direction to find help for Martina. We saw through a google search your story on Crystal Goodwin who also has MCAS, and her symptoms matched Martina’s. We will be forever grateful for your work. Thank you from the bottom of our hearts. Sincerely, Loretta, Herb, Martina and Arianna (and Keeva). 🙂
What a story! And how cool is it that you and Catching Health played a role in getting Martina diagnosed? Never doubt that your blog makes a difference, Diane!
Fabulous article, Diane. Thank you for sharing the story and enlightening us to early signs and symptoms of Mast Cell Activation Syndrome. And what a blessing that your work enabled Martina’s family to pursue the Service Dog avenue for their daughter. While not perfect, Keeva’s interventions are improving Martina’s life and providing early identification of her triggers. Nothing short of a miracle in many incidences, I bet.
I am forwarding your blog to Embrace A Vet veterans and caregivers, some of which have service dogs for Post Traumatic Stress and or Traumatic Brain Injuries. Our veteran families report that their service dog is life-changing as well.
Hi Diane: I have MCAS. My worst trigger is wireless radiation, radio frequency radiation, which is everywhere. I was studying to become an Electromagnetic Radiation Specialist (EMRS) educated at The International Institute of Building Biology & Ecology in Santa Fe New Mexico, when I became very ill in January of 2015. It seems that a number of people posting on your site also became ill in 2015, I can shed light on that.
My story is long, going back to 1997, the bottom line is now that I have been diagnosed with MCAS I know how to help others also suffering from MCAS or electo-hypersensitivity (EHS) which is a subset of MCAS by identifying the sources of Rf in their environment that they are unaware of and teaching them how to protect themselves from RF. I am not writing this a an advertisement but rather as a means of giving some hope to others.. I wish that someone had put this all together for me years ago..
Thank you for the work that you do.
Wendy..