'We laugh, we encourage each other, and there's no judging'

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By Louise Kinross (originally posted here)

In 2013, BLOOM covered a unique sewing project in Maai Mahiu, northwest of Nairobi, that was changing the lives of Kenyan mothers of children with disabilities. The program—then called Malaika Mums—is still flourishing and is now called Ubuntu Made. Ubuntu is an African philosophy meaning “I am because we are.” Mothers in the program make cotton bags, reusable coffee sleeves and beaded bracelets that are sold to provide them with income and support their children in an onsite school. We recently brought you an update. Now we interview Teresia Mugure (photo above, with son James, who is nine). James has attended the school for six years.

BLOOM: Tell us about your child.

Teresia Mugure: Jimmy, as he is fondly called by everyone, is a very joyful, happy, [active] and a very playful boy. He has intellectual disability and hyperactivity and is partially deaf. He also had delayed milestones like walking. He enjoys playing with other children.

BLOOM: How does Jimmy communicate?

Teresia Mugure: He communicates with sign language—by pointing to things or taking your hand and showing you what he wants—body language and facial expressions. Hearing aids help him hear at a high pitch.

BLOOM: How is disability viewed in Kenya?

Teresia Mugure: The common myth is that disability is a curse because the mother, or another family member, did something bad.

BLOOM: How did you feel when you learned Jimmy had disabilities?

Teresia Mugure: Sad, confused and lost.

BLOOM: What impact did Jimmy’s disabilities have on your family?

Teresia Mugure: Initially it had a negative impact, especially from family and friends. They didn’t know anything about disability, so it was a shocker for most of them. Then there were the myths associated with disability. 

But right now, we are well informed about his condition and how to manage it. Now they all love Jimmy and have learned that disability is not a curse. I have accepted my child as he is and am happy to have him. I enjoy spending time with him. He keeps me alert and I’ve learned so much about life just by having him.

BLOOM: What would have happened if you weren’t able to get work at Ubuntu Made, and for Jimmy to go to their special needs school?

Teresia Mugure: I just don’t know. Maybe I could have been homeless. But God is faithful and I have a job. When Jimmy joined at age three, he was not able to walk or do anything for himself. Without Ubuntu, my child would have never learned how to walk, and maybe his condition would have gotten worse.

BLOOM: I understand some fathers there are unable to accept their child’s disability. Is Jimmy’s father involved in his life?

Teresia Mugure: Yes, his name is Solomon and he is very supportive to the family and tries his best to support me to raise our two children. I also have another son who is 17 years old and completed his secondary education last year.

BLOOM: Do you like working with other mothers who also have children with disabilities? 

Teresia Mugure: Yes. We understand each other better and through psychosocial support sessions we laugh, we encourage one another and there's no judging. 

BLOOM: What is your favourite part of your job?

Teresia Mugure: Sewing. I like being on the machine and stitching. When I see the end product I’m always proud of myself. At times I cry when I have a flashback and see where we started, and where we are now. All I can say is ‘Thank you Lord.’

BLOOM: How has having a job changed things for your family?

Teresia Mugure: Working at Ubuntu Made has been positive. I’m able to take care of Jimmy and provide the best care possible. I can provide food, shelter, education and clothing. I’m a proud mother. I’ve earned respect in the community, among relatives and the general public.

BLOOM: What have you learned since being part of the program?

Teresia Mugure: I’ve learned to appreciate life and the importance of working as a team, family values, and caring for and loving my child.

BLOOM: How is Jimmy doing in the Ubuntu kids’ program?

Teresia Mugure: I have seen a total transformation in my boy. When he joined, he was not able to walk or do anything for himself. Right now he is the most active child in the program.

I am forever grateful and thankful to the staff who have journeyed with me. I’m at a loss for words. I will never be able to repay them for the services received.

BLOOM: What advice would you give to other mothers who live in places where disabled children are not accepted?

Teresia Mugure: Disability is not a life sentence and it is very manageable. I would ask organizations working in the field to try to reach and educate as many mothers as possible. There are a lot of false myths associated with disability in Kenya and Africa in general.

BLOOM: What are your dreams for the future?

Teresia Mugure: My dreams? Grow in my job, invest and be able to take care of my family. I’m too old to go back to school, but I have gained skills since I jointed Ubuntu. I’d like to talk to other mothers raising children with special needs.

Elections in Kenya - A Note from Ubuntu Co-Founder Jeremiah Kuria

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Peace! Peace! Peace!

Peace is all we ask for, during this election season.  In Kenya we hold our elections for all the leaders on Tuesday, August 8th (tomorrow!).  Everywhere you turn, everyone is asking everyone to maintain peace. All media houses are preaching peace, love and unity as we only have one Kenya as our country.  And though we are all speaking peace, the anxiety is still very high.  Fear, worry and great concern can be seen on people's faces, especially those who suffered during the elections in 2007.

The campaigns came to an end this weekend. The noise was high as anyone can imagine, as every candidate worked hard to convince us that we should elect them.  We have heard all kinds of promises for sure and now we wait until tomorrow to cast our votes. It should be a good and peaceful process as we elect our leaders, or so we hope. We speak hope because, once bitten, twice shy!

The memories of hatred, hurt and suffering still lingers even though the last general election was peaceful. The fact that families lost their loved ones and property during elections in 2007/8  makes everyone nervous every time our presidential candidates say something sensitive.  Many are afraid and scared for their lives as we think about the election this week.  I spoke to a friend last week and he asked if he could come to my house with his family if hell breaks loose once again. I told him that I hope we don't go there!  But he is welcome if need be.  That's just to tell you how scared people are for what may happen.  We should not live in fear in our own country.

We are reaching out to request all our friends to pray for our country that all will go well. To pray that peace will prevail.

May God bless Kenya.

Jeremiah Kuria
Ubuntu Co-Founder

June 2017 Medical Team Recap

A BIG asante sana to the doctors that fly halfway around the world to provide care for our almost 300 pediatric patients in the Maai Mahiu region. Ubuntu Health clinics provide access to essential health care for children with nowhere else to go. Our US medical teams and community health workers host quarterly clinics to provide specialty care and train with local health care systems to improve local access.

In June 2017, a team of doctors from Austin hosted clinics in Maai Mahiu that saw patients with everything from Gran Mal seizures to Rickets - an experience that will have long term effects not only on the health of the Kenyan community but on the doctors themselves and the way they practice medicine back in the states.

Ubuntu Health currently serves 260 pediatric patients, providing consistent follow up care and access to essential medications.  23 of our neural patients are now seizure-free and able to attend school and join mainstream society for the first time.

DOCTOR'S CORNER

"I saw this neuro patient who confessed to his seizures had caused him to suffer from severe stigma and social conflict with his loved ones.  Thanks to the medications and care provided at the clinics, his seizures are now under control. He only has one more semester to become a mechanic, at which point he will be able to leave his home and join mainstream society. 

He mentioned that he loved to draw, so I asked him to draw something for our medical student, Jordan Lange.  He was definitely in his element, and smiled from ear to ear as he drew.  His demeanor completely changed, and I went from crying with him to being proud of him and how far he has come!"

John Guerrero, MD

PAYING IT FORWARD

"Seeing the Dell Children's team members working together with Ubuntu and the community has furthered my interest in global health and pediatrics. The team's passion for education and preventative care was contagious and is something I hope to embody in my future practice as a physician."

Danae Massengill, Medical Student

TAKING THE NEXT STEP

The next big step for the Ubuntu Health program will be to hire a pediatrician and a nurse to be on the Kenyan staff. This will allow us to reach maximum efficiency during our medical team clinics and provide consistent medical care to the 260+ patients in between the quarterly clinics.

The cost of this expansion is only $1,000 a month. That's less than $4 per patient! We are calling on those who support our mission to help us with this next step.

Letter from the Co-Founder: Jeremiah Kuria

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I have attended a few fundraising dinners but never one organised by me.  It was daunting task - hosting for the first time with lots of unfamiliar territories to be covered, but we are glad we did! Kenyans are generally generous even though supporting charities is still new for many here.  Not to mention that the pool of philanthropists in Kenya is still small compared to the needs that face the country.  Giving fellow Kenyans an opportunity to support and give to Ubuntu Kids was a great task and we got a good number of friends who came through to support us.  Thank you friends for your love and support. 

We have served children with special needs for 9 years now.  Over 34 children have successfully been transitioned to programs where they can unlock whatever potential they may have.  For some, it is something as basic dressing independently, while others like Ruth with lots of physical challenges and has to walk with support continue to nurture the dream of becoming a doctor.  Ruth is a smart girl and our pride and can't wait to see her mental ability serve our country as a doctor. Currently the Ubuntu kids program is serving over 50 children under our care and the number could be bigger if we had the capacity.

Talking to a parent of a child with special needs in Kenya only gives you a glimpse of the huge responsibility and the many challenges that a family with no resources faces. We continue to struggle with stigma around disability and many children continue to languish in the dark as they are hidden from the community. For some it's the rejection that they face, while others its the shame and financial burden they have to carry of this child who nobody knows what to do with.

It has been a great joy to serve these little angels at our Ubuntu Special Needs Centre.  The Centre continues to be a source of hope and joy to many and continues offer great services that are so much needed.  

Until Friday, we had not had a rallying moment to give our Kenyan philanthropists an opportunity to help with this need. We met with the Kenya Ubuntu team and agreed that July 14th would be an amazing date to bring friends together and do our first fundraiser.  We had a great night, delicious dinner, wonderful music and the best ambiance possible. 

In our preparations for the day, we reached out to as many people as we could and talked to many friends and companies that we thought would be willing to join us. It was a great joy to be able to connect all the efforts of Ubuntu to these friends, and some have now committed to become partners.  The benefits of these fundraising efforts are more than the finances we received.   We raised awareness of our work and made friends and partners with people who had not known that Ubuntu Kids program exists. We have enjoyed the generosity of our Kenyan partners and will keep growing the donors and partners list in preparation for next years event.

What a joy it was to receive a huge support from our international friends. Our board members, our Tribe members, and even Ubuntu family members.  Amazing response to our request! I want to thank all of you who joined and supported our efforts to support these vulnerable children.  We promise to keep you updated regularly on the progress of our Ubuntu kids and continue to give opportunities of supporting as the needs arises.

Lets #liveubuntu

Ubuntu: I am: We are

Thanks and God bless

Jeremiah Kuria, 
UBUNTU Co - Founder and Kenya Director

Honoring Fathers and Family

On Father's Day, we honor all fathers and those who act as fathers. This year we asked Kelvin Chege, our occupational therapist at the Ubuntu Special Needs Centre (SNC), to tell us about his experience with the family of children at the SNC. As an individual who cares for these amazing kids with limitless potential and who helps restore hope to dejected families, we consider him an honorary Ubuntu father.

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The Journey to parenthood here, (Maai-Mahiu, Kenya) as with other cultures is always held with so much joy and expectation. When a couple is expecting a child, the society too expects with them. The hope is always to have a beautiful healthy baby who will carry on the family legacy while making a life for themselves.

Sometimes, this does not happen and the child arrives a little ‘different’ than had been hoped. Sometimes they arrive healthy but certain circumstances later make them ‘different’.
Having a child with disabilities in a rural setting such as ours (Maai-Mahiu, Kenya) can be one of the most daunting experiences there are to parents.

Parents have found themselves disoriented, alone, without a clue of where or whom to turn to or maybe even thrown to a point of despair. They find themselves, by no fault of their making, neither by choice, in new territory, none that they had ever seen or imagined. A once bright and hopeful future now becomes bleak, dark and unpromising. The society that had at one time hoped and expected with them now turn their backs, ostracize and even shame them ,breaking them down even more.

My name is Kelvin, an Occupational Therapist working with Ubuntu Kids Centre, a centre dedicated to kids with special needs and their families in our Maai-Mahiu community.
In my daily encounter with these kids and their parents, I have listened to numerous parents express how our centre has influenced them; taking them from a point of desolation to a point of purpose.

They have said:
- They were shunned by the society for having a differently abled child.
- They were denied work opportunities because of the strain raising their special child had on their productivity.
- They didn’t know how to accept their new status.
- They didn’t know how to properly handle and raise their special child.
- They didn’t know how to get back their joy and life purpose.
- They witnessed their own family dynamics crumble just because of the new special family member.

On the other side they said,
- Our Centre had renewed their strength and given them a new spirit in handling the change as a result of joining the psychosocial support groups that we organized.
- By providing the therapy services, individualized education programs, daily living skills training and social inclusion opportunities to their children, they had witnessed firsthand just how unfair  it was to set limits for their children’s abilities.
- They participated in numerous workshops that gave them capacity to communicate, feed, educate, and nurture their children to their full potential, the dream that every other parent has.
- They have learned how to be entrepreneurial hence self reliant in economically supporting the needs of their child with special needs and their families.
- Our Centre was a beacon of hope even for their kids self esteem. They felt appreciated even for the little stuff. Nobody here cared whether you wanted to be a pilot when you grew up, we cared that you were comfortable enough to hold a spoon and successfully take it to your mouth even if a little food spilled back to the plate.
- By joining our centre, they feel like they became part of one big family.

Ubuntu Kids Centre is growing even more and we are looking to reach even more kids.
We aim at creating a bigger impact on the lives of kids with special needs and their families in our area and beyond."