Tumaini initiative

Sickle cell disease , is one amongst the life threatening diseases with the sub Saharan Africa, Many children loose their live at early ages due to lack of earlier diagnosis,lack of facilities, expensive laboratory tests,lack of awareness and expertise in most Healthy facilities In Kenya .Within the Kenya coast especially Kilifi county were am coming from the problem has been increasing day by day ,hence creating many problems economical, social and psychological to both patients ,parents and guardians caring people living with sickle cell disease . The only hope today is the research  clinic in Kilifi County hospital  which normal sees patients up to 18yrs of age as per the study protocol after that lives turns back to the wast as majority of the patients  are living below a dollar per day. The challenge am dream to solve is to ensure that these people can have their on health facility full equip-ed with all necessary equipment used in a clinic,with enough staff from clinicians at least 3 ,nurses at least 4, lab technicians at least 2, Counselors at least 2, phymasists  at least 2,Drivers and an ambulance . My current program which i would love to be supported through your organization is how we can be supported to give Hydroxurea drugs the hundreds  patients who can not afford to buy this drug which has shown to give the best performance in managing sickle cell disease as its an expensive drug and its to be used for live and this is one of the major objective of forming this support group.

My solution is just bringing this people together, give them enough information regarding the life problem they are facing , giving them hope that they can still live , do other things like any other person like going to school university,can be employed , can get marriage and remove fear from their mind , final building self esteem of the affected boys and girls

My target population are the scd patients who are actively coming to clinic and also those who are not able to attend the clinic due to lack of finance or their ages  have grown to  above 18years where they are supposed to talk care of themselves of which most of them are seeing their graves approaching them. Am strongly encouraging them that this should get out of their mind and away will open to see them surviving to adult ages

Am working with a very bright and devoted team of both people with sickle cell disease ,parents and guardians who jointly come together and formed this group to solver three major problems being Awareness,how patients can jointly get hydroxurea,How one can be quickly assisted one he/she needs blood transfusion which is a common problem in their life span.

Being the major, i have aboard made up of A chairman and a vice, secretary and a vice, treasurers and four board members.We also have three committees of 5 people each  to be planning possible ways of meeting the 3 objectives thus -Blood committee, Awareness committee and Hydroxurea committee to make our program succeed . The Covid -pandemic real affected us , as we couldn't make any great  move since 2020 ,but before that when we started in 2018 we could do great things . However we resumed our operation this year and we are doing great

The greatest challenge the group is facing today is financial problem ,the drugs these patients are supposed to use on daily basis are very expensive ,the frequency of ward admissions per year has made most being poor since one my end up selling piece of land to clear hospital bills,cost of traveling seeking medication are also high,so i strongly believe with a support only to issue hydroxurea or have them enrolled with NHIF cover in Kenya and have it renewed per year can be of great support to them. In side of technical is this most of the nearby health facilities lack equipment to handle these patients and also the staff have no much experience in handling scd patients  hence creating a big problem to people living in the interior side of kilifi county like Bamba, we also need laptops at least 2 where we can keep or records but we still using counter books which may get lost .With legality we don't face a big challenge since or group is registered under ministry of social services but i don't know in future what will come up , In market not product but our group and idea is that our group is very new we only registered it and have an account, we need to have a website, face book page ,and more social media accounts also having an office and employ social workers who can help in facilitating various tasks on daily basis.In cultural issues we have a big part to play as an organization since scd id contributed by both parents ,but due to lack of awareness most families resist this ,instead believing its witchcraft and other traditional issues from the "Mijikenda "community within the Kenya coast region, However we do give enough information to affected cases as one of our major role.

My solution is very important to to all who know about Sickle cell diseases and its challengers to both patients and families affected as a whole and in Kenya specific al Kenya coast where most families are affected this has contributed a lots of problem and the support give to them is not much hence making these a patients lose hope of life like any other Human being . I strongly believe if this solution is considered it will create a big positive impact to hundreds families who has lost hope in their children , believing that their life span is short of less than 20 years which is not so under proper care and medication they can live to above  80years "Tumaini"-is aswahili word meaning hope -my dream is to return hope to this families and patients with scd . I expect it to increase life expectancy of the beneficiary children and adults patients ,also the strong believe in my community will change by people seeing how best these patients live under Hydroxurea treatments

My impact goals are-

- reduced nos of ward admissions per year for scd patients.

-Reduced days of missing school due to frequency crisis

-Incensed scd children acceptance by families

-Reduced family conflicts

-Increased hope of survival by scd patients themselves

-Have a register to know how many people has been admitted per week and assisted by the group.

-How many patients has been assisted to get blood on admission per month

-Parents report when the come to clinic on how they have been attending school

-Parents/Guardian/patients reporting any conflicts related to sickle cell disease which needs the department of social services with the hospital to be involved

My solution will have an impact to the problem because as at now people are really suffering , on seeking medication for scd ,no much information regarding scd i well known in the world with exception of  developed countries like ,USA,UK,INDIA and other areas , the developing countries like Kenya Sickle cell disease is really life threatening problems , where no early diagnosis is done , families associate it with traditional issues hence creating very many family conflicts .Having research clinic in Kilifi contributed to positive out come since 2006 and has helped the community a lot. Being a project Manager i strongly believe these problem is within my own community and i should have a best way possible in solving ,as the theory  goes by true development is knowing your problem and having possible way of solving it. Thus we own the problem and this initiative will bring light to my community regarding children born with scd.This will bring a positive change that they are just like any other diseases that people can live with unlike what is at now , most of the community is not well informed , families are living under fear of unknown future of their children.

As an organization which is at its early stage we real need support of technology and this has been a great challenge to us , we cant market our organization, we cant upload any event done by the group we only use whats-app group for any communications and information sharing. The future plan is to have a well improved system to meet the current standards,and we are to think more on disposing waste as our drugs at the end has waste materials which needs to be well disposed but we are yet to put a good plan.

This self help group was formed in order to help all affected patients, parents ,Guardians who live with sickle cell disease so all are involved the only exclusion criteria is by not paying your registration fees  as a member of Ksh 1000 and your monthly contribution of Ksh 200 for emergencies which face its members , so age is not an issue as we have various ages and they all suffering from the same problem hence being a family