Sefiat was diagnosed with Acute Myeloblastic Leukaemia (AML) in December 2017. She has been on cytotoxic chemotherapeutic agents estimated at 150,000 Naira (equivalent of 415 USD) per month since diagnosis. Bone marrow transplantation is the cure for AML for which we believe she'll benefit from. The procedure is quite expensive and is only offered outside of Nigeria. Any assistance towards her treatment will be appreciated.
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Manifest is now 9 years old. She is the second of four children born to the most hard working parents. Manifest’s pregnancy was normal and unremarkable. However, there was unfortunate medical errors at time of birth that resulted in significant trauma/brain injury that manifested as cerebral palsy (CP). In her current city of residence - River State Nigeria, she does not have access to appropriate holistic intervention and her parents have exhausted all means to get access to holistic consistent care for her. Despite their best effort, she is unable to walk or verbalize correctly. However, her cognitive skills are promising and she does not have the most severe manifestations of cerebral palsy - limb contractures. These are really encouraging signs. Within the past 3 months, family and friends have partnered with Manifest’s parents to determine evidence based interventions that have the highest potential to help Manifest thrive. Specifically, they consulted with neurologists with expertise at management of CP. These consultations confirm that she is a good candidate to benefit from a package of holistic interventions offered through a special program in Kampala, Uganda. The program is run by a team of clinicians affiliated with an NGO whose mission is to create a future for children affected by CP (see: www.latohelp.com). A crucial part of her holistic therapy includes intensive supportive care-physiotherapy, speech therapy, social therapy, occupational therapy and education. These therapies are delivered with a consistent routine featuring daily repetitions over extended period. This is what it will take in order to attain the treatment dose needed to retrain her young brain to gain the ability to perform functions it currently lacks - i.e. gain mobility and speech. The supportive care is provided through a specialized school for children with disabilities (see: http://specialchildrenstrust.org/site/). All of these resources are in Kampala, Uganda. The exact recommendations from professionals following initial evaluations are as follows: Observations 1. She has CP but with a good level of cognitive function. 2. The video shows that she has full range of motion both with the upper limbs and lower limbs 3. She also has no visible contractures based on the video. 4. She’s already using assistive devices to support her legs. Recommendations 1. Based on what we have been able to observe, she will not require any surgical intervention due to the absence of contractures. This is because she is able to attain full range of motion with the upper and lower limbs. 2. To improve on her cognitive function, the child will need routine or daily occupational therapy and speech therapy for period not less than 1 year. This will help her communicate better and respond to her surrounding well. I would recommend special needs school where all these services are offered. On top of that, she will also be able to attain a good level of education. 3. She will need continued physical therapy training coupled with other assistive devices such as a standing frame, walking frame and eventually she will be able to support herself. As Manifest continues to advance in age, the window of highest probability for success in re-training her brain to regain function begins to narrow. We have been advised this therapy is most effective when started before ten years of age. That reality is understandably alarming to her parents, friends and family and is the primary reason for this appeal at this time. This family has explored and exhausted options for similar care in Nigeria and nearby West African countries. After considering the limited options available to them, they are taking a leap of faith as a last ditch effort to get needed help for Manifest by leaning into the Uganda option. While multiple medical evaluations related to CP will occur at no cost to the family over her time in Uganda, the supportive care and educational component have associated costs. The least estimate of associated cost per year is $18,000. The cost includes: tuition -$2000, room/board - $6000, transportation-$2400, utilities -$3600, moving supplies/cost - $3000. Considering the range and intensity of therapy provided, this cost - while truly prohibitive for this family, is not unreasonable considering its scope, intensity and the life changing impact it will have on Manifest and this family. Indeed, Manifest’s condition and the high level of care required has made it impossible for at least one of Manifest’s parents to be gainfully employed. Kindly see the attached video message from Manifest and her mother describing in their own words the genesis of Manifests condition, its impact on their lives and the transformation that this treatment will have on their family. In support of this family's aspiration for their little girl, this appeal is being made to friends, family and strangers. We ask you to prayerfully consider standing with Manifest by supporting this family in gaining access to therapy that will enable Manifest thrive. The family is hoping she can commence therapy within 6 months. Specifically, we are asking you (the reader of this message) to consider supporting Manifest and her family in this journey via one or more of the following: 1) please pray for Manifest in this journey that God will divinely move heads, hands and hearts in directions that: 1) eases the logistics associated with accessing this therapy away from home and 2) that favors her healing and rehabilitation through these programs in Uganda; 2) please consider instrumentally supporting her journey by contributing whatever you can to help defray the above itemized costs and 3) please consider sharing this among your social networks in the hope that as many individuals with the means and inclination to support Manifest are able to see it. While anyone of us may not have what it takes alone, working together we can ease the pain of this journey for this family while supporting Manifest in reaching her God given potential. We thank you for taking the time to listen to this video message from her family and reading her story. We are united in our hope that this story will change and end well with our collective effort. We are most grateful for your generosity in doing what you can to deck the odds in favor of this little girl’s healing and recovery. God bless you.
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