Mid July 2026: Since the Diagnosis — Learning, Referrals, Therapy and a Lot of Appointments

Since Pippa’s Pitt-Hopkins diagnosis on June 30, Mollie and Ethan have been doing what I suspect most parents do when suddenly handed a diagnosis they had barely heard of before:

learning everything they can, asking a million questions, and trying to make sure Pippa gets every bit of support she needs as early as possible.

The last several weeks have involved an extraordinary number of appointments, referrals, evaluations, phone calls and forms.

Regional Center and Early Start

Pippa was already receiving Early Start services through North Bay Regional Center, but her diagnosis changed the conversation considerably.

Her services have been reviewed and expanded, including additional physical therapy and developmental support.

Mollie and Ethan have also started the process of establishing Pippa’s longer-term eligibility for Regional Center services under the Lanterman Act, rather than simply receiving services because of developmental delay.

There has been a lot to learn very quickly — what services are available, which programs overlap, which ones don’t, and what Pippa may be entitled to as her needs become clearer.

Stanford Children’s

At the same time, Mollie and Ethan have been working their way through a series of referrals at Stanford Medicine Children’s Health / Lucile Packard Children’s Hospital.

Pitt-Hopkins can affect several different systems in the body, so getting the diagnosis means looking at Pippa as a whole rather than treating each developmental delay separately.

She has now been referred into a number of specialties, including:

There is still more testing and follow-up ahead, including imaging and ongoing monitoring.

None of this necessarily means that Pippa has every medical issue associated with Pitt-Hopkins.

Much of it is about establishing a good baseline now and making sure that if something does develop, Mollie and Ethan are not starting from scratch trying to figure out where to go.

Therapy, movement and equipment

Physical therapy has remained a huge part of Pippa’s week.

She is working on sitting, transitions, crawling, standing and eventually walking, and Mollie and Ethan have continued to pursue additional therapy and equipment wherever they think it may help her.

That has included a pediatric walker and looking at more intensive therapy options beyond her regular weekly sessions.

They are learning very quickly that with a rare condition, sometimes the standard pathway is not enough.

A lot of this involves finding the right specialist, then the right therapist, then figuring out who will authorize it, who will pay for it, and which piece of paperwork everyone needs next.

And then there is everything else

Alongside all of this have been applications and conversations around military and TRICARE support, ECHO, EFMP, Medi-Cal eligibility, equipment coverage and specialist care.

Mollie and Ethan are essentially building Pippa a whole team.

Doctors.
Therapists.
Regional Center.
Specialists.

It is a lot.

Only a few weeks ago they were dealing with developmental delays without knowing why.

Now they have a diagnosis, a direction and a much clearer understanding of what they need to be looking for.

There are still plenty of unknowns.

But Pippa is busy doing what Pippa does — learning, working hard in therapy, and showing everyone a little bit more of who she is every day.

And Mollie and Ethan are doing everything they possibly can to make sure she has the support and opportunities she needs.