Please help my friend, Kristina Brightbill

Last October was a nightmarishly dark time. My friend Seth had a catastrophic metabolic crisis a few days before his third birthday so severe that I honestly cannot believed that he survived. He was in the hospital in California trying to sort out effective and tolerated IV nutrition when he crashed. Seth is a mast cell kid with no safe foods. None.

As impossible as it sounds, Seth was not the only little boy at that hospital in California with no safe foods. There was another little boy there named Lucas, who also has mast cell disease. These little boys and their parents became very close friends, bonding over the absurdities and terror of having young children who can’t eat. Lucas’ mom, Kristina, was also a mast cell patient. When Seth was crashing, Kristina called me and we worried together.

At the time that Seth was having his metabolic crisis, Lucas was a year old and exclusively breastfed due to his frightening and prolific food reactions. Kristina had removed almost all foods from her diet in order to provide nutrition that could Lucas could tolerate. Eventually, she was only able to eat quinoa, organic cantaloupe and one brand of safe water. She herself was predictably experiencing physical issues from such a restricted diet. Her breast milk was Lucas’ only safe food and she sacrificed her health for his.

The week after we worried together on the phone about Seth, Kristina was preparing to take Lucas home to Florida after months admitted in California. On a Friday afternoon, she had anaphylaxis, and then she had a stroke. No one realized what was happening until it was too late. In a matter of hours, Kristina became a prisoner in her own body. The stroke was in her brainstem and she has locked-in syndrome.  She is 26 years old.

Kristina is completely aware and able to understand everything happening around her but cannot move or speak. She is able to communicate by blinking while someone points to letters and spelling words in this way. She continues to have ongoing health issues secondary to the stroke and mast cell disease. Her needs are very, very complex.

After months of inpatient care and stroke rehab, Kristina will be going home to be with her devoted husband, their son and her family and friends. Her home has required significant remodeling and she needs round the clock care to stay safe. Kristina also needs a vehicle that can transport her in her chair in order for her to be able to safely go home. As you can imagine, meeting all of these needs is a massively expensive and time consuming undertaking.

Parents of mast cell children often say that they would give anything to help their kids, that they would gladly lay down their lives to stop their children from suffering. Kristina literally gave everything she had to make her body a vessel capable of producing a food that her son could eat.

If you have ever been helped by this blog, or me, or anything I have written, please help my friend, Kristina.

Kristina’s family just found out about this contest to win a van that can transport her in her wheelchair. Please vote for her. Voting closes in two days but it is still worth a shot.  If the link doesn’t work, please cut and paste the following address into your browser:

http://www.mobilityawarenessmonth.com/entrant/kristina-brightbill-sarasota-fl/

If you are able and would like to donate there is an ongoing fundraiser for Kristina and Lucas, who will both need expensive lifelong care.  Please cut and paste the following address into your browser:

https://www.youcaring.com/kristina-brightbill-jedidiah-brightbill-lucas-brightbill-379577

Many thanks. Please keep this family in your thoughts/prayers/good intentions. There is always hope.

14 Responses

  1. Patrick Jordan May 30, 2016 / 7:57 am

    All involved have my deepest regrets over this situation. I would change my diet immediately to the D’ Adamo blood type selections to avoid red blood cell agglutination that would increase danger of stroke. Within those selections I would find foods lower in fungus than melons that might have contributed to stroke as suggested by Hulda Clark. Anyone with mast cell disorders who are under continuous care by mainstream physicians should open up a discussion on the source of the dextrose in IV fluids. I do not know if alternative dextrose sources are available anymore but going into the discussion knowing that physicians are either evil or willfully ignorant (a form of evil) should force the decision to abandon anyone that stupid to find another doctor that pays attention to details that can mean health or life. Environmental Medicine, Beginnings and Bibliographies of Clinical Ecology. Theron Randolph, MD discovered in the 1970s that patients could react to corn, cane, or beet sugars in the IV solutions to the point of having violent neurological conditions. He turned them around with injections of sodium bicarbonate. I do not support the use of any kind of injections but that was his method. It would also be helpful to investigate the role of systemic pH during mast cell attacks. All interventions will be palliative until a reversal of the genetic mutations is found.

    • Lisa Klimas May 30, 2016 / 4:13 pm

      Anyone can react to anything. Kristina’s locked in syndrome was caused by a stroke.

  2. Elizabeth Metcalf May 30, 2016 / 8:40 am

    Voted! And will tomorrow also

    And shared widely

  3. Kristin Elam May 30, 2016 / 9:16 am

    Done!

  4. Helen Ames May 30, 2016 / 9:57 am

    Lisa, Are you on the Inspire’s EDS forum? This would be a awesome vehicle to garner more votes given their huge membership. This is such an upsetting story! So kind of you to advocate on this family’s behalf. Helen

  5. Kay Boling May 30, 2016 / 11:44 am

    Registered and voted for Kristina!

  6. Shirley Roberts May 30, 2016 / 1:47 pm

    Lisa: if they haven’t already putting the story on her local tv station may be a way to get a lot more help.

  7. Pam Hodge May 30, 2016 / 3:25 pm

    It looks like you can vote once every day!!

  8. Shelly May 31, 2016 / 7:06 am

    I will pray for this family – and vote!

  9. becca May 31, 2016 / 8:10 am

    Lisa, as a friend of the family, you can judge whether they will want to know about, if they don’t already, this memoir of locked-in syndrome: The Diving Bell and the Butterfly – Wikipedia, the free encyclopedia
    https://en.wikipedia.org/…/The_Diving_Bell_and_the_Butterfl…
    Wikipedia
    The Diving Bell and the Butterfly is a memoir by journalist Jean-Dominique Bauby. It describes what his life is like after suffering a massive stroke that left him with locked-in syndrome. It also details what his life was like before the stroke. On December 8, 1995, Bauby, the editor-in-chief of French Elle magazine, …
    Jean-Dominique Bauby – Wikipedia, the free encyclopedia
    https://en.wikipedia.org/wiki/Jean-Dominique_Bauby
    Wikipedia
    Jean-Dominique Bauby was a well-known French actor, author and editor of the French fashion magazine ELLE. He had two children with Sylvie de la Rochefoucauld, a son named Théophile and a daughter named Céleste. Contents. [hide]. 1 Memoir; 2 Legacy … Called locked-in syndrome, this is a condition wherein the mental faculties …
    The Diving Bell and the Butterfly: A Memoir of Life in Death: Jean …
    http://www.amazon.com › … › Diseases & Physical Ailments
    Amazon.com, Inc.
    In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the …. Bauby had Locked-in-Syndrome, a rare condition caused by stroke damage to the …
    The Diving Bell and the Butterfly – Goodreads
    http://www.goodreads.com/…/193755.The_Diving_Bell_and_the_B...
    Goodreads
    Rating: 4 – ‎40,147 votes
    It’s called “locked in syndrome,” and Jean-Dominique Bauby finds himself a victim ….. Shelves: the, literature, autobiography, french, authors, twentieth, memoir, …
    The Diving Bell and the Butterfly – The New York Times
    https://www.nytimes.com/…/970615.mallon.html
    The New York Times
    Jun 15, 1997 – After a devastating stroke, the author dictated this memoir using only his left … her poem set in a French hospital complex by the Channel coast. … of ”locked-in syndrome,” mentally alert but deprived of movement and speech.
    Exploring “Locked-In Syndrome” Through the Case of Jean …
    http://www.studentpulse.com/…/exploring-locked-in-syndrome-through-the-ca...
    by KYK Law – ‎2011 – ‎Cited by 1 – ‎Related articles
    His memoir The Diving Bell and The Butterfly was published in French in 1997, two … Bauby’s narrative of Locked-in Syndrome as told in his memoir allows us to …
    The Diving Bell and the Butterfly (2007) – IMDb
    http://www.imdb.com/title/tt0401383/
    Internet Movie Database
    Rating: 8/10 – ‎89,162 votes
    … he quickly learns that he has what is called locked-in syndrome which has resulted in … of Universal Music Special Products and EMI Music Publishing France

    • Lisa Klimas May 31, 2016 / 10:38 am

      Hi, Becca,

      Thanks for sharing this information. Her family has done a lot of research and is aware of this case. The movie was really insightful, I thought. They are also in touch with a woman named Kate who had a brain stem stroke and recovered the ability to walk and speak.

      Thanks again for thinking of my friend!

      Lisa

  10. Christie Katke May 31, 2016 / 10:40 am

    Voted!!

  11. Angelica Heavner June 2, 2016 / 6:45 am

    Sorry I missed this in time to vote. Life has gotten extremely difficult and busy and haven’t had time to read half my emails and fb. My prayers are with the family and hope she gets the van and other equipment she and her son needs to live safely.

  12. Kathy June 2, 2016 / 7:16 am

    Lisa,
    My heart aches for Seth, Lucas, Krsistina and especially her husband. Sending healing thoughts to all.
    The voting was closed by the time I got to this email but I will do what I can. The financial burden and resulting stress of a catastrophic illnesses is devastating.
    Thanks for sharing.
    Kathy

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