miracle

Keira’s 3-Year Post Gene Therapy Check Up

I can’t believe it’s been three+ years since Keira received this life-saving treatment. As we do annually, one of us heads back to Italy with her, along with Eva and one of our Moms (while the other stays home with Livvy), for her usual check up.

But this is not just your typical pediatrician visit. It’s 4-5 full days of various tests, blood draws, and evaluations to ensure everything internally is working as it should and that there are still no signs of MLD.

Here is what each day entailed:

Day 1

  • Basal Blood Sample + Urine Tests
  • EEG
  • General Clinical Evaluation
  • Audio/Visual Evaluation
  • Left Hand Wrist X-Ray to determine bone age
  • Cardiological Exam + Echocardiogram and Electrocardiogram

Day 2

  • Psychological Exam

Day 3

  • Abdomen + Thyroid Ultrasound
  • Neurological Motor Examination

Day 4

  • MRI
  • Bone Marrow Aspirate
  • Electromyography
  • Lumbar Puncture
  • Blood Draw

Day 5

  • Endocrinological Evaluation

I am happy to report that all of her tests (so far) have come back great! The white matter in her brain that, as a baby, showed some inital signs of degeneration have actually now shown signs of regeneration in the MRI. There is no other word for it than miraculous.

And Keira handled it all very well, all things considered. When we spoke with her on WhatsApp one day, she nonchalantly said, “Oh ya, I just got a blood draw at the hospital.” Then continued on with the conversation about the playground they went to the other day.

We knew she was doing well, and is even advanced in some areas, but to have this confirmation from the doctors that everything internally is just as it appears externally, is a huge relief!

It is amazing to see her grow and develop in ways we never got to see with Livvy, and we can’t wait to see what the future holds for Keira.

Because all went so well, we now only have to go back every other year for check-ups. See you in 2025, Milano!

See a few photos from her time at Ospedale San Raffaele below:

What a Miracle Looks Like

I recently took these photos of Keira when she was playing on Livvy’s Make-a-Wish swing set, and I can’t stop thinking about them. I’m sure to a “normal” parent, this would look like everyday life. But to me, seeing Keira’s face in both pictures…it just exudes hope, joy, happiness, and gratefulness. Her standing there, so strong…it’s what a miracle looks like (to us anyway). It is something her sister Livvy was never able to do. And the fact that Keira can, will forever blow me away.

I’m sharing these photos here not for just our own memory, but to also give hope to any other family whose newborn receives this diagnosis; to show the advances in modern medicine; to show what’s possible when the government and insurance companies get out of their own red tape and grow a heart; to show what is possible if EVERY child is screened at birth for this disease. Thousands of lives would be saved annually. And so many families would be spared of the devastation, grief, and heartbreak that comes with losing a child. Instead, they would get moments like these.