Coping & Support
In this section, you’ll find our two CLOVES publications for kids, blogs, e-magazines, access to our secret FaceBook group, as well as resources for coping with progressive and chronic illness.
Four Leaf Clovers – A book for young children with CLOVES
The story of Four Leaf Clovers draws parallels between children with CLOVES Syndrome and those without, focusing on acceptance, inclusion, and diversity. Four Leaf Clovers strives to not only illustrate acceptance but to shine a light on some simple ways being different can have its benefits. While it was written with CLOVES Syndrome in mind, Four Leaf Clovers is truly a story about embracing differences of all kinds. The age range for this book is approximately 8 and under, but the message is for people of all ages!
Four Leaf Clovers was written by Lauren Beaureguard, in collaboration with Kristen Davis, Executive Director of CLOVES Syndrome Community, and beautifully illustrated by artist Kate Fitzpatrick.
You can make a donation of $25 here – indicate you’d like a copy of Four Leaf Clovers in the memo line – to cover the costs of printing and shipping the book in the US. If you’d like a copy mailed internationally, please email us about shipping rates at [email protected]
Incredible You – A Book for Kids with CLOVES
This book was created by author Lindsay Passodelis, in collaboration with CLOVES Syndrome Community. This book is geared towards kids and teens ages 8 and up, and is suitable for kids with CLOVES, their friends, and family members.
In this book you will meet Kate, a ten year old with CLOVES Syndrome. You will read about Kate’s medical experiences, how she talks about CLOVES, her friendships, how she copes and how she loves to have fun.
There are two ways to access this resource
- Suggested donation for this book is $15, to cover our costs to print and ship. If you put a check in the mail, enclose a note with how many copies of the book you would like.
Donation options here If you donate online, please add a note in the memo line that you are donating towards Incredible You. If you’d like a copy and cannot afford the $15 suggested donation, please contact us at [email protected], as we may be able to offer you a book for reduced cost.
- Print out the PDF of the book for free.
- Peace, Love, Heal – A blog about living with CLOVES
- Bandaides and Blackboards – This is a site dedicated to kids growing up with medical challenges
- Sew Able Dolls – Unique dolls just like you! – a company that makes dolls with special needs, wheelchairs and adaptive equipment
- Paralyzed pets having fun – A recent CBS article on pets with special needs
- Complex Child E-Magazine – Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities
- Disarming Disability – We live with a disability, but that’s only part of our story.
To join our secret Facebook Group for people with CLOVES and/or their primary caregiver(s), please friend our welcome account.
Some people with CLOVES/PROS receive Special Education services in the public school setting. Learn about Special Education laws, your rights, resources to have on hand and some pro tips about how to keep all of your educational paperwork organized.
Organizing your records:
Does your child have an IEP? Get a sturdy 2-3 inch binder. This will be traveling with you for many years to all your meetings.
Your binder sections:
- IEP/504 (include all 504 plans or IEPs and amendments)
- IEP progress notes (YOU MUST RECEIVE THESE EVERYTIME A “REGULAR ED” REPORT CARD COMES HOME – even if it takes another two weeks or so.) If you receive three report cards, you receive 3 progress notes with details about how your child has progressed on IEP goals.); IEP written notices, also called “prior written notice” even when written after a meeting (These are the school’s meetings notes. Include your OWN meeting notes in this section. Legally, you are allowed to bring anyone to an IEP)
- Special education evaluations and reports (include any private evals or medical reports, if that applies)
- Standardized Assessments (include any state assessments-in MAINE: NWEA, NECAP, STAR, Acuplacer-high school-PSAT, SAT; School Report Cards (include high school transcripts)
- Home/school communication (either log time, date, content of calls or copies of emails pertaining to services, grades, IEP)
- Timeline: each year document concerns about school work and staff interaction/student placement. You can’t predict when you needs this, so do it proactively. It can be helpful in Annual IEP or 504 plan review when you are asked to document parent concerns IN THE IEP or verbally at a 504 review meeting.
- Also print off some info about CLOVES Syndrome from this website.
IEP EXPLAINED (the form):
(Pennsylvania Secondary transition information) http://www.pattan.net/category/Educational+Initiatives/Secondary+Transition
Executive Functioning information:
Laws to keep in mind: ADA (504), IDEA (IEP), FAPE (Free Appropriate Public Education)
And resources to guide you at meeting time:
- Evaluations http://adayinourshoes.com/iep-evaluations/
- Parent Input http://adayinourshoes.com/creating-vision-statement-childs-iep/
- Documentation http://adayinourshoes.com/iep-prior-written-notice-pwn/
- Legal help http://adayinourshoes.com/wrightslaw-iep-special-education/
Want to learn more about CLOVES and PROS research, but you don’t have a PhD? Introducing Research Simplified. Research Simplified is an initiative started by KIF1A Associated Neurological Disorder (KAND) to help patients and families understand complex topics in published papers.
CLOVES Syndrome Community has identified this as an unmet need for our community, so we are beginning this initiative as well. We are reaching out to the authors of published papers to assess their interest in helping us with this project. The summaries will be published here on our website.
Family Assistance Program
The CLOVES Syndrome Community Family Assistance Program provides financial relief to families impacted by CLOVES Syndrome. We are a community that understands CLOVES Syndrome and the associated financial burdens. Our mission with the CSC Family Assistance program is to alleviate some of the costs associated with medical care, medical-related travel, and other CLOVES-related needs.
To qualify you for this assistance program, you or your child must be:
- Diagnosed with CLOVES Syndrome
Financial assistance must be associated with the treatment, travel, medically needed equipment or expenses unique to an individual living with CLOVES Syndrome.
Some examples of qualifying requests are below, but are not limited to:
- Costs associated with travel and lodging for medical treatment
- Cost of medical equipment associated with the treatment of CLOVES Syndrome
- Medical expenses from co-pays/deductibles
- Costs associated with genetic testing
- CLOVES Conference related costs
Applications will be reviewed by our Board of Directors at the next scheduled meeting. If you express an URGENT need, the board will aim to review within one week of receipt of a complete application.
Below is a partial list of multidisciplinary Vascular Anomalies Centers that may provide treatment, monitoring, and oversight for CLOVES/PROS. Providers on this list should not be construed as recommendations by CLOVES Syndrome Community.
- Arkansas Children’s Hospital Vascular Anomalies Center – Little Rock, AR
- Boston Children’s Hospital Vascular Anomalies Center – Boston, MA
- Children’s Health Vascular Anomalies – Dallas, TX
- Children’s Healthcare of Atlanta Vascular Anomaly Program – Atlanta, GA
- Children’s Hospital Colorado VAC Program – Denver, CO
- Children’s Hospital of Los Angeles – Los Angeles, CA
- Children’s Hospital of Philadelphia – Philadelphia, PA
- Children’s Hospital of Wisconsin – Milwaukee, WI
- Children’s National Vascular Anomalies Clinic – Washington, DC
- Cincinnati Children’s Hospital Hemangioma and Vascular Malformation Center – Cincinnati, OH
- Columbia Vascular Anomalies Group – New York, NY
- Doernbecher Children’s Hospital/OSHU Hemangioma and Vascular Birthmarks Clinic – Portland, OR
- Helen DeVos Children’s Hospital at Spectrum Health – Grand Rapids, MI
- Johns Hopkins Vascular Anomalies Center – Baltimore, MD
- Johns Hopkins All Children’s Hospital – St. Petersburg, FL
- Kentucky Children’s Hospital Vascular Malformation Clinic – Lexington, KY
- Lucile Packard Children’s Hospital-Stanford – Vascular Anomalies Center – Palo Alto, CA
- Nemours Vascular Anomalies Center – Orlando, FL
- Seattle Children’s Vascular Anomalies Clinic – Seattle, WA
- Texas Children’s Hospital Vascular Anomalies Center – Houston, TX
- University of California San Francisco Birthmarks and Vascular Anomalies Center – San Francisco, CA
- University of North Carolina Vascular Anomalies Clinic – Chapel Hill, NC
- Vanderbilt Children’s Hospital/Monroe Carell Jr. – Nashville, TN
- Multidisciplinary Birthmarks and Vascular Anomalies Clinic at University of Wisconsin Hospitals & Clinics – Madison, WI
- Sick Kids Vascular Anomalies Clinic – Toronto, ON
VASCERN Provider Listing
- St. Luc Centre for Vascular Anomalies – Brussels, Belgium
- Necker Enfants Maladies/Syndromes of Hypergrowth – Paris, France
- Great Ormond Street Hospital – London
Email us at [email protected] to add a provider suggestion
Below please list of private and commercial providers who may be able to get you/your child to out of state medical treatment.
Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org
Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.
Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.
The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. The KidCares program is fueled by generous mileage donations of Northwest’s WorldPerks members, which are then matched by Northwest. Availability of the program is based on that donated WorldPerks mileage, and consideration of each request is based on the following guidelines.
Mercy Medical Airlift: www.mercymedical.org They are associated with Angel Flight. Commercial flights.
Operation Lift Off: http://www.operationliftoff.com/Mission.html. Provide air transportation to specialized care and treatment centers.
Angel Flight East – is a nonprofit organization that facilitates free air transportation to children and adults in need of medical treatment far from home. Volunteer pilots use their own aircraft and pay for all costs of the flight. AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations.
List of multiple options: http://mercymedical.org/helpful-links/
In addition, if your child has Medicaid, some or all of their medical travel/expenses may be covered. Check with you/your child’s Medicaid worker.
Finding well fitting and appropriate footwear can be a huge challenge for people living with CLOVES. Our shoe resources page includes shoe providers to purchase two sizes of shoes, shoe modifications, adaptive/non-traditional footwear and 3D printed shoes.
We’re developing a workgroup to discuss, brainstorm and advocate for shoe related needs for people with CLOVES. We anticipate beginning work on this project at the end of August 2020. Please sign up if you are interested and we will be in touch!
Companies that provide adaptive/non traditional shoes and extra wide shoes:
- Zappos Adaptive – Adaptive shoes and more
- Zappos Single Shoes – Single and different size shoes
- Big and Wide Shoes – A company that provides big and wide shoe brands
- Grow Five – The Shoe that grows expands five sizes and lasts for years
- Billy Footwear – Fashion and Function forward shoes for everyone
- Hitchcock Shoes – Extra Wide Shoes (2E-8E)
- Silvert’s Adaptive Shoes and Clothing
- The Wide Shoes
- Kepner Scott Shoe Company
- World of Ugg – Adaptive shoes
Modified and Custom Shoes:
- SoftStar Shoes – Custom moccasins. Ask for Elf Katie about custom orders
- Video about Croc Modification – Created by parents of a child with CLOVES
- Hersey Custom Shoe – We make custom made shoes one at a time
- DIY Barefoot Footware
- One Family’s journey with 3D Printed Shoes
- Orthopaedic Bespoke Shoes
Companies that sell two different sizes of shoes:
Shoe brands that come in Extra Wide and beyond:
- New Balance
Email us at [email protected] to add a shoe resource suggestion that has worked well for you.