The Just Because Foundation: Care Beyond Cancer

It’s a parent’s worst nightmare.

A childhood diagnosis of cancer is something that shakes you as a parent — it simply makes no sense why anyone so young and precious could be so ill.

While you are still trying to wrap your mind around your new reality, the worst part of the experience is often the lack of support.

It was this first-hand experience that led Noel and Chevaughn Joseph to create The Just Because Foundation (JBF), in memory of their son Jabez ‘JB’.

The Just Because Foundation is a non-profit organisation dedicated to improving the quality of life for children with cancer and their families. JBF provides emotional, social and practical support services for families of children aged 0-16 with cancer, at no cost to the family.

JBF’s key services include:

• Short-term “home away from home” accommodation for families from remote areas, allowing them to be closer to the hospitals while their child accesses medical treatment
• Transport shuttle services to receive medical treatment, toiletries/grocery items and laundry/housekeeping services
• Provision of support services at The JBF Specialty Unit at The Wendy Fitzwilliam Hospital in Mount Hope, Trinidad, including furnishing and maintaining the multi-function playroom, parents’ lounge, computer zone and library
• A “Siblings Only” club to address the emotional needs of the brothers and sisters of the sick child
• Counselling, advice, bereavement support and other family care services

“In some cases, your own family and friends are really there only until the dust settles — they then have to go back to their busy lives; but for you and for your child it’s only just beginning,” explains co-founder Chevaughn Joseph.

“JBF is there to make things easier in every way imaginable for the entire family — it is not just the sick child in need.”

A Desire to Do More

The Just Because Foundation was launched on 2nd March 2007, the date JB would have celebrated his sixth birthday.

JB was diagnosed with Alveolar Rhabdomyosarcoma, a rare form of paediatric cancer, in 2005.

After a couple of misdiagnoses and a surgery to remove part of the large tumour that had started in the lymph gland under his neck, the Josephs travelled to England for major surgery which involved removing half of JB’s tongue and rebuilding it with stomach muscle. This was an amazing procedure.

It was whilst in England that the idea for the JB Foundation first took root.

“We got such a warm welcome; there were so many support services for parents,” Chevaughn says.

“At the hospital in Newcastle, England, he was given free reign to move about, whereas in Trinidad he had been sort of locked away because, at the time, children being treated for cancer had to remain isolated in cubicles for their own safety.

“When it was time to return home, JB was so upset — he didn’t want to go back to the ward in Trinidad; he wanted to stay in ‘Hospital Heaven’. We resolved to recreate that experience back home.”

Having already been propelled into service to others through their own volunteering and charity work, the Joseph family found strength and purpose despite the tragedy they faced.

Within months after JB’s passing, The Just Because Foundation opened its doors and their hearts to providing services for families in need.

Home Away & Hospital Heaven

One of the key services provided by JBF is the Just Because Foundation Respite House, a “home away from home”, which was originally located next door to their own family home.

“Everything just fell into place; the four-bedroom house became available only a month before we had to open. Little did we know that an even bigger blessing was on its way. After the first few years of using our own vehicles to transport the families, we received the donation of a 15-seater Toyota Hiace Commuter courtesy Toyota and the Rotary Club of Port of Spain West. Everything just lined up as the foundation began to grow,” Chevaughn says.

“We started off with nothing — just the passion to do something for these children, for these families. We knew that even if we didn’t have the resources to do it, we would find a way.”

Chevaughn and Noel stumbled upon an unused ward at Mt. Hope Hospital. Remembering JB’s need for ‘Hospital Heaven’, they sought the ear of those with the power to create his vision. Noel used his experience in the advertising and communications industry to create a short documentary on the need for children with cancer to have their own ward at the hospital.

In 2008, the JBF Paediatric Specialty Unit was launched at the Wendy Fitzwilliam Paediatric Hospital, Mt. Hope. It is the Caribbean’s first multi-disciplinary, family-centered children’s ward. The ward, which has 21 beds, services the children of Trinidad and Tobago as well as the wider Caribbean region, including not only cancer patients, but those with other chronic, non-communicable diseases (CNCDs).

JBF spearheaded the project in collaboration with various doctors, social workers, other NGOs, interior designers, and generous sponsors, volunteers, and suppliers of the furniture and equipment required for the ward.

JBF has also arranged a programme where free lunches are provided for the parents/family members of patients while at the ward. This group that facilitates this is called ‘Loving Lunches’ and is coordinated by Cherise Stauble and Friends.

Beyond raising funds to maintain the ward and its support services, JBF is also involved with financial assistance for families.

“We have had fundraising events or meetings which resemble a telethon,” adds Noel. “We reach out to others to see how we can assist to help get urgent medical treatment. We have never had to turn down a child in need.”

Support for the entire family

The JBF also facilitates in terms of providing support to other members of the family of the sick child.

“A few weeks after JB died, our daughter RaVen, who was nine years old at the time, came to us and told us she felt invisible and unloved,” Chevaughn says.

“This is how it can seem to many children in this situation. We have met families where siblings have tried to hurt themselves, just to go to the hospital and get presents and attention from everyone.”

Realising the need for this emotional support, JBF pioneered the ‘Siblings Only’ club in 2008. The SibClub meets at least four times a year and sessions include talks on nutrition and exercise, horseback riding, hiking, crafts, drama, fun and games. It also includes a group therapy session, which allows the children to share their experiences and emotions.

“Soon to come onstream is the JBF Embrace Parent Bereavement Support Group, borne out of the understanding that emotional support does not end after the loss of a child. For many parents, it is only after their child’s death that they are able to come to terms with emotions they have suppressed while engrossed in caring for a sick child,” Chevaughn says.

She and her husband continue to find strength in knowing the impact they have had on those most in need — to date, this amounts to hundreds of children and their families.

The JBF Foundation has also been publicly recognised and awarded. These awards include:

• 2008 – Gayelle Pierrot Award for Community Service
• 2008 – FirstCaribbean International Bank – Unsung Heroes Award
• 2008 – Miss World Pageant – Beauty with a Purpose – Best Charity Project in the World
• 2009 – Certificate of Recognition – Ministry of Health – Contribution to improving the quality of healthcare provided to the population
• 2010 – National Association for the Empowerment of African People (NAEAP)
• 2013 – Ministry of Sport – Spirit of Sport Award (SOSA) – Sport for a Social Cause

Despite only being in existence for seven (7) years, JBF has made significant strides, as evidenced by their numerous awards of recognition. The JBF also acknowledges the various arms of the media for its support and positive coverage over the years that has drawn the attention of many sponsors.

“Still, we understand that corporate sponsors cannot commit to one organisation for life; funds must be redistributed amongst the many worthy causes in T&T,” says Chevaughn.

“We have been blessed in so many ways, but it is still a constant challenge, and there will always be a need for all kinds of help.”

The Josephs are deeply grateful to everyone who has believed in them and shared their vision over the past seven years.

The Future of JBF

The Foundation continues to innovate and expand their capacity as the leading resource in the provision of comprehensive and holistic support for children with cancer and their families. They are also considering ways to improve the delivery of healthcare services as it pertains to children.

One of their primary long-term objectives is to acquire land and resources needed to build the Jabez Joseph Respite Facility and Wellness Complex. This unique facility will include ‘Home Away from Home’ Accommodation as well as a Physiotherapy Room, Movie Theatre, Meditation Room, Remedial Classroom and Mini Auditorium.

The JBF also continues to spread awareness through the Smoke Out Tour, which is an annual public service national tour advising the public in general and parents in particular, about the dangers of ‘third hand smoke’ and its effects on young children. They also share valuable information on the potential harmful effects of E-cigarettes and ‘Vaping’.

As a key facet of their mission, the JBF also emphasises the importance of being vigilant enough to notice early warning signs for cancer.

“Many children come to us at a late stage because their parents or guardians missed the signs…” Chevaughn says.

“Some of us have a ‘don’t worry about it’ culture when it comes to children, but we should be more concerned. Parent education is important — the intention is not for people to be paranoid, but to be aware. Take your child for a physical once a year; get blood tests which can pick up abnormalities. It could be nothing, but it is always best to rule it out.”

Further Information

• JBF generally caters to families who have a child up to the age of 16. Priority is given to families at crisis point who have little or no other support.

• All support services are provided at no cost.

• If you are interested in assisting the JBF, here are a few ways you can:
  • Financial/Monetary Contributions
    • 100 Ways: $100 contribution per month for a 12 month period.
  • Events
    • JBF Kiddi K – Children’s Walk against Paediatric Cancer – annual
    • JBF H.O.P.E. Concert – annual
    • Kids Who Can Cook – annual
    • JBF Siblings Club – every other month
    • JBF Smoke Out Tour – By Invitation & Cancer Awareness Month
  • Services
    • Transportation – Patients to and/or from treatment
    • Providing Grocery items
    • Room Make Overs – for patients and/or siblings
    • General Cleaning “Home away from Home” – every three months
    • Yard Maintenance – “Home away from Home” – every month
  • Administration
    • Data Entry Clerks
    • Microsoft Suite experts – Word, Access, PowerPoint, Excel, Publisher
    • General Administrative/Management
    • Accounting
    • Event planning and coordinating
  • Communications/Media
    • Graphic design/artwork
    • Television Production/Radio/Music
    • IT Support / Computer Maintenance & Repairs
    • Photography
    • Webmaster – Website updates
  • JBF Paediatric Specialty Unit & JBF “Home Away from Home”
    • Providing coloring books, activity books, storybooks, supplies etc.
    • Plant Maintenance – JBF SU Mt Hope
    • Decoration and design
    • Arts and Crafts Sessions
    • Story Time
    • Movie Time