<div>Thank you for visiting this page and supporting us. We are the PROUD parents and big brother of an extraordinary boy, Sandro. He was diagnosed with a rare genetic condition four months after birth. This disorder is called Pallister-Killian Syndrome (PKS).
</div>
<div><br />
</div>
<div>We are raising funds throughout the year to help us pay for all his therapies (MNRI, Physiotherapy, Occupational Therapy, Music Therapy, Speech Therapy, Adaptive Swim), therapy intensives, and, equipment that are helping our son gain muscle tone or some social independence. Hopefully, the end goal is to get him to walk and talk and be as independent as possible in the future.
</div>
<div><br />
</div>
<div>So far, this journey hasn't been easy for us because as a parent, you never want to see your child go through tough things, but Sandro has taught us never to give up and work hard to reach that end goal. We hope that we can spread as much awareness towards PKS and hopefully be able to change how this disorder is perceived and hopefully help other families receiving this diagnosis.
</div>
<div><br />
</div>
<div><em>What is PKS?</em>
</div>
<div><em>Pallister-Killian Mosaic Syndrome or PKS is a chromosome abnormality when a tetrasomy of the short arm of chromosome 12 (12p) occurs for no known reason.</em>
</div>
<div><br />
</div>
<div><em>PKS has the following characteristics:</em>
</div>
<ul>
<li><em>low muscle tone</em>
</li>
<li><em>facial features that are common to the syndrome-high forehead, broad nasal bridge, wide space between the eyes</em>
</li>
<li><em>sparse scalp hair at birth</em>
</li>
<li><em>high, arched palate</em>
</li>
<li><em>hypopigmentation</em>
</li>
<li><em>cognitive and developmental delays. Although most PKS children have these delays, many children are only mildly handicapped.</em>
</li>
<li><em>diaphragmatic hernias</em>
</li>
</ul>
<div><br />
</div>
<div><em>PKS happens randomly and for no known reason. It is thought that there are fewer than 500 diagnosed cases of PKS in the world, however, doctors at Children's Hospital in Philadelphia believe that the incidence of PKS is much higher! They feel there may be as many as 2,000 cases in the United States alone. So why aren't these numbers reflected? There may likely be this many cases, but they are going undiagnosed. The leading cause of these undiagnosed cases is the method of testing. PKS can be diagnosed in utero via amniocentesis, although occasionally, even this has produced a false negative.</em>
</div>
<div><br />
</div>
<div><em>After birth, diagnosis is best made by a buccal smear or a skin biopsy. New array blood testing can be very accurate. The blood cells in the body quickly regenerate, and the mosaic cells leave the bloodstream after just a few days, making a diagnosis via bloodwork inconclusive or falsely negative.</em>
</div>
<div><br />
</div>
<div><strong>With the proceeds we raise here, all will go towards Sandro's therapies and equipment. </strong>
</div>
<div><br />
</div>
<div><strong>Specific equipment/therapy for 2026:</strong>
</div>
<ul>
<li>Sandro has another <strong>therapy intensive in 2026 </strong>that will cost approximately $5,000 CAD.
</li>
<li>Sandro is trialing a TobiiDynovox using the TDsnap eye-gaze communication system, we will be putting most of the donations towards buying him his very own (hopefully by December 2026) 
</li>
<li>We aim to contribute some of the proceeds to <strong>support other children with disabilities</strong>. The true beauty of life is witnessing others thrive!
</li>
</ul>
<div><br />
</div>
<div>We couldn't thank you enough for taking the time to read our story, for helping us spread awareness, and for helping us help our son!
</div>
<div><br />
</div>
<div>With love and gratefulness,
</div>
<div>Jennifer, Frank, and, Sebastian Romita
</div>
<div><br />
</div>
<div>Special thanks from <strong>SUPER SANDRO</strong>!
</div>
<div><br />
</div>
<div><strong><em>FYI: December 4th is dedicated to raising awareness for this rare disorder, and our goal is to increase understanding as much as we can. To support this cause, we will organize an annual walk for Sandro &amp; PKS in our community. Given the harsh winter temperatures in Canada, we've chosen to hold the walk in August to coincide with Sandro's birthday. #WeWalkForSandro</em></strong>
</div>

Laura Distefano

Mirjana Beljo

Lisa Tesone

Carissa Atletico

Erika Marchese

Oleksandr Hoplyakov

Anthony Cerra

Genta Costa

Jessica & Antonio Taurasi

Elisa Colella

Michelle Gravett

Angela Mariani

Gianmarco Bernaudo

Gianpiero Cancelliere

Alexia Taurasi

Salvatore Marchesano

Anonymous

Sue Minchella

Susan DaCosta

Andrea Romita

Help Support Sandro's Journey with PKS

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

dyn_template_ids

Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

fundCountryCode

NextDoor Share Option Users

Fundraisers with Reactions feature capability

fundCurrencyCode

US + Non-charity COs Only

locale

fund country is US and user language is English

personId

comms-internal-person-ids

Enhanced Story Experience Users

Suggested Goal Experience Users

user language is English and fund country: US, AU, DK, FI, IE, NO, SE, CA, GB; 

Poster share - new funds eligible (newest 9/18)

Streaming widgets beta user

paymentProcessor

3DS payment method

user language is English and fundCountry: US, AU, DK, FI, IE, NO, SE, CA, GB; 

GoFundMe Employees

ipAddress

Mark Rieth IP Address

Version 9.2.0 and above

Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

paymentMethodType

checkoutType

Payment method type group to be vaulted on success

admin pr kit prod

EUR Donation Upsell

Share Text generation Skip Fundraiser

(prod) new funds eligible for amp12 (UGC gallery)

fintrac_cad_idv_form_v2 audience

paymentProcessorAccountId

fallback mode accounts

proCampaignId

p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

fundId

braze fundraiser group 

Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

charityCommunityId

Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

currencyCode

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

writePath

Stream Notification

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

unclaimed charities

prod_ach_audience

AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

Users Receiving Braze KYC Validation Failed

Native 11.3.0 and above

Influencer - Prod

US fundraisers and US users

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

isCampaignOwner

fundHasInstagramDeepLink

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

Excluded funds - Video Sharing

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

userCurrencyCode

Localized Currency

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

isChallengeFundraiser

challenge-fundraisers

Payment Identity Launch Verification - Production

New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

Help Support Sandro's Journey with PKS

Still $475,331 to go. Help us build momentum.