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Maria, Peppa and Co

@better_with_a_setter

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𝟜 𝕜𝕚𝕕𝕤 | 𝟙 𝕤𝕖𝕥𝕥𝕖𝕣 | 𝕟𝕠𝕟𝕧𝕖𝕣𝕓𝕒𝕝 𝕒𝕦𝕥𝕚𝕤𝕞
dirty paws & daily chaos
married to medicine | laugh by prescription
C-ville, VA

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February 29 is Rare Disease Day, and for our family it carries very real meaning.

Leo’s autism isn’t “just” autism. Through free genetic testing with the SPARK for Autism research study, we learned he has a PTEN gene mutation — a condition so uncommon that he is roughly 1 in 250,000.

The PTEN gene is a tumor suppressor gene. Its job is to regulate cell growth and keep cells from dividing too quickly or in an uncontrolled way. When there’s a mutation, that regulation doesn’t work properly. In some children, like Leo, it presents with autism — often nonverbal autism — along with other medical considerations. It carries a significantly increased lifetime cancer risk, which means proactive surveillance becomes part of life: regular screenings, specialists, and long-term vigilance.

There is no cure for PTEN Hamartoma Tumor Syndrome. There isn’t a medication that “fixes” the gene. What we have instead is knowledge — and knowledge changes everything. It guides his medical care. It shapes our monitoring plan. It informs therapies. And it gives us clarity instead of guessing.

If you are a parent of a child with autism, I say this gently and respectfully: don’t stop at the behavioral diagnosis. Autism describes what we see. Genetics can sometimes explain why. Testing may not always change treatment, but sometimes it changes risk management in profound ways.

SPARK’s genetic testing @sparkforautism was free. It was simple. And for us, it was life-altering.

Leo is rare. He is medically complex. He is at high cancer risk. And he is also joyful, affectionate, stubborn, funny, and deeply loved.

On Rare Disease Day, we celebrate awareness — not because we can cure this, but because understanding it allows us to protect him. Preventative screenings. Informed doctors. Early detection. And an acute awareness that every ordinary day with him is, truly, a gift.

📸❤️ @mariatykvenko.photo

#ptenmutation #ptenfoundation #raredecease #geneticmutation #nonverbalautism by @better_with_a_setter

Sweet PEPPA! 🐾
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@englishsetter_peppa - our Lucky 🍀 2k Contest winner!
It was an honor and a privilege capturing Peppa’s sweet face on paper! Her delicate coat and sweet little freckles! I am in love! 🐾
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I hope she makes you smile too!
▶️🌸 scroll to see the sweetest little friendship
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Please share if you enjoy my account! It’s the only way we grow! And onto our 3K Giveaway!!
Thank you for all the love ✌🏽💗🌸
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#giveaway #englishsetter
#dogsoginstagram #lovepets #watercolorsketchbook #loosewatercolor #watercolor #tannmarieart #doglover #dogs #watercolorart #artist #aquarelle #giftideas #gifts #cat #catart #catsofig #beginnerartist #beginnerwatercolor #northvillemi #northville #michigan #madeinmichigan #cat by @better_with_a_setter

Back from the ACP convocation in New Orleans and I thought it might be a good time to reintroduce ourselves

Meet the Knight crew of 6 ✨

📌While dad is saving lives at Mayo clinic Florida, mom is the CEO of the house. Our oldest are a fearless goalie and a dance queen. Leo is nonverbal autistic and teaches us new ways to love daily, and our toddler girl runs the whole show like a tiny boss

📌Our English setter failed as a service animal but they recently brought a stray cat from the shelter who favors Leo over anybody else. I think we might start a new trend #autismcat

Chaos, mess, laughter and plan B on the go - it’s our kind of normal.

Everyone who made it this far welcome 🤗 by @better_with_a_setter

Loving on them is a full time job by @better_with_a_setter

And even that extra hour of winter time is not gonna save us 🙃🤦‍♀️🥴🤕 by @better_with_a_setter

Both are tired the next day 🫠

#autismparents #halloween2026 by @better_with_a_setter

Why RPM? And why believing in a method that ASHA does not endorse?

I talk openly about the method, the cost of lessons, the controversy surrounding ASHA’s position, and most importantly, why I believe Leo deserves every opportunity to communicate.

For us, this isn’t about chasing a miracle or a quick fix. It’s about presuming competence, not hurting, committing, and never putting a ceiling on what our child might be capable of by @better_with_a_setter

50 shades of Peppa by @better_with_a_setter

by @better_with_a_setter

by @better_with_a_setter

4 armpits zero privacy 🤭 by @better_with_a_setter

And those who are in travel sports, cheer, gymnastics or ballet are all year around 🙈🫠
How are we doing mamas? by @better_with_a_setter